As many as 5.3 million Americans are living with Alzheimer's disease, and 50 million people are attempting to care for their elderly parents in various states of health.
Caregiving experts P.K. Beville and Virginia Morris will answer your questions about caring for aging parents and how to deal with parents who have Alzheimer's or dementia.
Beville is a geriatric specialist, creator and author of the "Virtual Dementia Tour." Click here to visit her Web site, www.secondwind.org.
Morris is the author of the best-selling book "How to Care for Aging Parent."
B. GILBERT, Idaho Falls, Idaho: I am a 63-year-old divorced woman with no children and no living relatives. How do I find someone who will look out for me should I get Alzheimer's or end up in a nursing home?
MORRIS: Don't despair. Things will work out, but you do need to plan. Most important, get a lawyer and sign a durable power of attorney (which gives a person -- in your case, a trusted friend -- the legal authority to act on your behalf should you become unable to so do) and a power of attorney for health care (someone who will make medical decisions for you). Then, talk to this friend, or friends, about how you want your care, your finances and other issues handled. Talk in some depth about your wishes, your fears, your goals. But chose carefully, as you are giving someone a lot of power.
You should also explore the options and services in your community. For example, are there any Continuing Care Retirement Communities, which offer a full spectrum of care (typically you enter them while you are still independent and healthy? While the idea might sound frightening, most people are glad to have a community of friends and the peace of mind of knowing they will be cared for. However, they tend to be expensive. Learn about other housing options and home-health services as well, so you can make some choices in advance, should the need arise.
GREER B., Cumming, Ga.: My father-in-law has been living with us since his wife died four and a half years ago...he is 89 now. He doesn't want to do anything so we don't make him. I argue with my husband that he should take him out to do things but he won't. We have to make him shower and shave, he never gets dressed, he will only step outside to pick up his newspaper if we throw it outside his door. My husband takes him to the grocery store every 2 to 3 weeks and that is all he does. I've sent him to a senior center near our old home but they called and said he didn't socialize at all. He seems content doing nothing. Do I just let him? He has a pacemaker but otherwise in perfect health. He fixes his own breakfast and lunch and I do dinner for him so he'll come upstairs and be around me. What to do?
MORRIS: Ask his doctor about depression, which is common -- and commonly ignored -- in the elderly. Don't accept "He's old, what do you expect?" because depression is a disease, and it is not 'normal' at any age. If you are told that, take him elsewhere for treatment. Continue sending home to the senior center, as getting out and being around others is a good habit. Consider other things he might enjoy -- audio books, hobbies, stuffing envelopes for a local non-profit, a pet of some sort. Perhaps a student who needs to do some community service work might do something with him a few afternoons each week. Get your father-in-law to do some small errands or chores for you. And he should get some exercise, even if it's just walking to the store or around the block. Look out for yourself and your marriage. Do things the two of you enjoy, time when you are not discussing your father-in-law.
ANNA, Ontario, Calif.: I'm 41 years old, married and have a 17 and 12 year old sons. My father was just diagnosed this month with early stage dementia, but has been showing some signs for about 2 years prior. My father will be 77 yrs. old but only takes less than 5 medications a day with only arthritis and BPH to date in his medical history, until now. Physically he can still manage to travel out of the country every 6 months and most of the 6 months here in the states are spent with me in my home. I have been changed by all of this and my only mission now is to preserve my father's and also my mother's dignity and that the rest of their lives are spent a happy one. I'm torn because i feel my sons and my husband are not only continuing to live their lives as they please, spending less of their time at home and when home they show little regard to provide any socialization to my parents. It seems as though only pressure from me to them is when they make some effort. Although my sons are teenagers and my husband and I have work or sporting activities etc. I feel this is a small sacrifice from us to give to these two wonderful people who have done nothing but LOVE us all. I feel that after having so many heart to heart discussions about how I feel to my husband and sons and crying, begging for them to do this now while they still have time, not just in our home but while they are still alive, I feel as though my plea for support has gone unnoticed or unimportant above their own personal day to day needs and wants. This time is temporary no matter what and I resent my family very much because they can't see that. Why can't we put our lives on hold, but only for a moment? I need to understand this because I don't think my marriage will survive this battle against my "mission" Please help me!! Thank you.
MORRIS: First, kudos to you for loving your parents so deeply and for wanting to care for them. However -- big however -- you can't expect others to share your devotion or your mission. Resenting them will not only hurt them and you -- perhaps irreparably -- but it will hurt your parents. Surely they would be devastated if their care broke up your marriage or distanced you from your sons. You need to accept that your husband and your sons are never going to feel as you do, no matter how hard you push. It's not that they are uncaring or insensitive; surely if you were sick and needed care, they would be on a 'mission.' But these aren't their parents, and they aren't you.
Have a meeting with your husband and sons to discuss the situation. Explain your feelings and then listen -- really listen! -- to theirs. Together, establish some reasonable tasks -- dinner a few times a week together, a couple of chores, that sort of thing. And then let it go.
Finally, take a deep breath. You love your parents. You are sad to seem them age. You don't want to lose them. You want to give them a good life. All good. But this is likely to be a long, and increasingly demanding, job. Don't burn yourself out; you're only on the first lap. While your husband and sons might need to give a little more, perhaps you need to take a lesson from them too. Love your parents, but back off a little. Have a life, see your friends, take time out. I promise, you will be a better caregiver to your parents if you take care of yourself, your marriage and your relationship with your boys.
Virginia, Albuquerque, N.M.: Me & my sister have been taking care of our mother. We take turns, so she comes to our house for one year at a time because she thinks we are tossing her around and doesn't understand that we both need a break. Every now and then I want to go out with my friends for 2 to 3 hours, never leaving her alone by herself, she is always with family. She feels that we have to stay with her 24 hours a day and nobody else will do, so if I go out for a short period, when I come back she doesn't stop nagging and she can go on for hours and hours. Do I just stay home or what can I do?
MORRIS: Stick to your guns. You're doing the right thing. You cannot be with her 24/7. Indeed, it's critical that you get away, take breaks, and take care of yourself. It's quite possible that when your mother berates you for leaving her alone, she is really expressing larger fears – that she will grow old alone, that you won't be there for her when things get tough. The next time she nags you about leaving her for an evening, don't fight back. Give her a hug and say something like, "Mom, I imagine all of this is very hard for you. Know that I love you and I will always care for you."
SUKIE, El Paso, Tex.: My Father is 89 and has heart problems, diabetic and tends to be anemic frequently. He still drives, yet there are times he is so weak he can hardly keep his eyes open let alone walk straight. I have asked and asked him to stop driving and have been met with resentment and anger. A major part of the problem is my very controlling, 82-year-old mother who requires a lot of attention and who wants only my father to drive her to her many doctor appointments, errands and shopping. My fears are obvious, that he will fall asleep while driving. They live in their own home and by themselves. They will not even discuss any assistance, particularly a nursing home or assisted living. What is my best course of action?
MORRIS: As for driving, it's not simply their lives that are at stake, but other lives. Don't ignore this. Call the DMV and see if there are driving refresher courses for the elderly, which might help your father see that he's not able to drive. Or maybe he simply limits his driving to certain times, avoiding evenings when he's tired, rainy days, rush hour. Talk to your father's doctor and see if he/she won't tell your father and can't drive. Learn about other transportation options. And then stand firm. Clearly, driving is only one issue you face. Find a quiet time to talk with your parents about their current situation and the future. Don't make demands; ask questions. And then listen. Really listen. What are their fears, goals, hopes, worries? What will happen when one of them can't manage simply daily tasks, or the stairs in the house? Where would they want to live if that house simply wasn't a viable option? How will they pay for long-term care? Etc., etc. It's likely they will dodge your questions, but be clear that you want to help and need to know their thoughts and wishes.
CRYSTAL, Winder, Ga.: My mother is taking care of my grandmother who is very demented. I don't think my mother is capable of taking care of her the way she needs to be taken care of. I don't even know what my question is other than I feel my grandmother isn't being taken care of properly and I don't know what I can do to help or what would be best for her. I don't think my mother can afford a home for her, but I don't think she can give her the care she needs...What do I do?
MORRIS: Think about what it is that you're mother should do differently. It's going to be hard to move forward unless you pinpoint the problem. Is she neglecting her in some way? Being abusive? Contact the local Alzheimer's Association (www.alz.org) and learn about local services. Perhaps there is a day program or support group that might help (support groups not only offer emotional support; people share helpful tips and advice as well). In the meantime, give your mother a lot of support and breaks. As you well know, this is an incredibly tough job your mother has taken on, and she needs your full support now.
IVETTE, Miami, Fla.: How can I tell my mother who has mild Alzheimer's that her dear sister has died? She knew that she was very ill and 93 but.
MORRIS: Unfortunately, you just have to be honest. Remind her that her sister was elderly and quite ill, and give her a lot of support. The problem you face is not simply how to tell her, but how to tell her the second and third time. I'm afraid this is just the kind of thing she might forget. When she is troubled, get her to reminisce about her sister and her youth. While her short-term memory is faulty, she may enjoy tapping into long-term memories of a better time.
JOYCE, Cumming, Ga.: My 85-year old mother has Alzheimer's and lives with me. I am single and have no other relatives to help, so am her sole caregiver and it is becoming more and more challenging. I currently have her in adult day care during the day while I am at work, which is paid for by Medicaid. However, I need to begin looking for permanent placement for her because as her disease progresses I know I will no longer be able to care for her. My problem is that there are very, very few facilities in my area that take Medicaid patients. Those that do have three beds in a room and are not where I would want my dog to live, much less my Mother! I can't afford to self-pay to get her in one of the local "assisted living" facilities, so I don't know what to do. If I keep her at home, there is a chance she could hurt herself, but I just can't bring myself to put her in one of those horrible places. Help!!!
MORRIS: You are on the right track, accepting your limits and planning ahead. Good work! If you haven't done it already, contact the Alzheimer's Association (www.alz.org) to learn all the options that are available in your area. Medicaid would rather give you the support you need to keep your mother home than have her go to a nursing home (because it's cheaper that way), so some states have programs to help people on Medicaid stay at home. The folks at the adult day care center should also know about local services and options. If she has to go into one of the nursing homes, then stay involved and vigilant to get her the care she needs. The National Citizen's Coalition for Nursing Home Reform can help you understand her rights and yours (go to www.nccnhr.org and click on the "Consumer Center" tab).
LAURA, Hartselle, Ala.: I have been taking care of my mother-in-law, who has advanced Alzheimer's, for the past 5 years. She can not fix her own meals, bathe herself without step by step instructions or get her own clothes to wear each day, and most days she does not know who my husband or I are. She does not wander off (we are thankful for that). Her monthly income is just over $2000. This means if we put her in a nursing home she would only be able to stay for the 100 days that Medicare will pay for because she makes too much for Medicaid to pay for long term care. But she doesn't make enough to pay the $5000 a month fee for the local nursing homes. I am a full time student and my husband works 60 hours a week. It is putting a strain on both of us to keep her the way we feel she should be cared for. I, like the woman's sister in your story, don't feel like any other family member would take as good care for her as I do, not that any of them have offer or even called to see how she is and if they could help. My question is, what can we do to get her long term care?
MORRIS: I'm afraid that Medicare won't cover nursing home care unless it is preceded by a hospital stay. However, if her assets (bank accounts, stocks, bonds, etc.) meet the state Medicaid limits (usually $2,000 to $3,000) then she will qualify. Generally, her income goes toward the monthly nursing home fees, and Medicaid covers the rest. But Medicaid rules vary from one state to the next. Talk with the financial folks at the nursing home, or the local Medicaid office to see what is possible in your state.(You can find your local office through the Centers for Medicare & Medicaid Services, www.cms.hhs.gov.)
DONNA, Minneapolis, Minn.: My 91 year old father was diagnosed with dementia in January, 2009. He has mild to moderate dementia and cannot understand why he isn't able to go home with my mother. He is in a Memory Support Center and has a severe swallowing problem, also. Mom cannot care for him at home now. He continues to cry and want to go home with her. He is lucid most of the time but then becomes confused and angry that he is not able to go home. This is very upsetting to both my parents. How can we deal with his situation best to try to ease his confusion and still be respectful of his feelings? We just want to be sure we are doing the very best for my father. It is heartbreaking for our family.
MORRIS: Surround him with as many familiar things from home as possible. Make his room look similar to his room at home, if you can. Put up a calendar marking all the days and times of upcoming visits. Get him a webcam so he can view your mother and she can see him. If none of this works, leave him on his own for a short while and see if he starts to calm down and meet other residents. Different approaches work with different people. He is going through so much right now. Just when the world became topsy-turvy, he left everything that was familiar and safe, so this reaction is to be expected. It will take time for him to adjust. Talk to the staff at the center and see if they can make an extra effort to get him involved and to console him. They have seen this time and time again, and should be helpful. In the meantime, your mother needs you. Give her a lot of love and support.
EVERETTE, Charlotte, N.C.: My parent has been displaying advanced signs of dementia for several years. The problem is that it's starting to affect the small business he owns. Collecting money and doing basic things necessary as a business owner require assistance from my other parent. Clearly, the parent needs to come home, but is very proud, and won't listen to reason. Is there a process to address retirement for dementia patients? Or should we let then continue working, even though unscrupulous customers take advantage of them when a third party isn't around?
MORRIS: Clearly, work is vital to your parent's life and well-being. But it's also clear that you can't let the business suffer, and as the confusion becomes worse, the problems will only mount. Be creative. Find a way to let your parent feel that he/she is involved and helping, but perhaps not in ways that could cause any real financial trouble. Either give your parent a task that is away from those unscrupulous customers, and/or be sure that everything is reviewed carefully later. The longer your parent work -- or at least have the sense of working -- the better off he/she will be. At some point you may have to give your parent jobs that are more invention than reality.
LAURA, Lubbock, Tex.: My 88-year-old father is still trying to keep my 84-year-old mother at home and take care of her. I have tried to help and at first my father pushed me away saying it was his responsibility to take care of her through better or worse. Now 12 years later she has finally gotten diagnosed as having Alzheimer's instead of Dementia and is on some Alzheimer's medicine! I want to know for others facing the same future is there a way to get the patient diagnosed as having Alzheimer's sooner so the medicine will be given to them earlier?
BEVILLE: Your family is very fortunate to have a daughter like you that is so attuned to the problems at hand. Many times, our elders feel as though they are being burdensome or showing signs of weakness if they lean on their children for help. As a result, they seem to push us away. In your Father's proud mind, it is his responsibility to care for your Mother but I know it is almost unbearable to watch your Mom slip away.
It is possible to diagnose Alzheimer's disease relatively early but we can't fault your father for not getting her help sooner. Of course, the sooner a person is examined by a memory specialist and treatment begins, the better, but for your father, while he probably doesn't say much, it has been horrifying to watch his wife of many years become another person. So many times spouses try to cover up the cognitive loss for their mate so that they can continue to enable their loved one to function longer. In his mind, he is protecting his wife and himself from terrifying news. I know you may feel a little upset with your Dad, but he is doing all he can. Now that the diagnosis is made, you may be able to chip in a little easier. I have found that it is easier to just go ahead and help, at first, in small ways and don't ask if you can. Your presence and attentiveness to their needs will give you the direction you need to "just do it". Love up on your Mother and Father as much as you can.
LYNN, Los Angeles, Calif.: My grandmother has been diagnosed with dementia. She is living in an assisted living facility and hates it. They hate her there as well. She is mean and makes accusations often towards the staff and others at the home. I guess my two questions are: Is the constant/everyday mean behavior normal? Every Alzheimer's article or TV show I watch never seems to really display behavior like my grandmothers. Is there a way to get through to her and let her know that she can not live on her own anymore?
BEVILLE: It's a shame that you haven't seen people with dementia showing the behavior your grandmother is showing. As a matter of fact, if it's any consolation, a very high percentage of those with dementia have some serious behavior problems. However, my experience with the kind of behaviors your grandmother has, they have been a pattern for her for a very long time and, it's become magnified as the disease has progressed.
Ask your grandmother's doctor to tell your grandmother the truth about her inability to live at home. As long as she believes she can go, she will continue to try. Pull your family out of that argument altogether after the doctor has talked with her. Be sure another family member is present. Also, when the doctor does this, have him or her put it in writing so that whenever the issue comes up again, and believe me, it will, the letter should be pulled out and showed to her. This should be done in a supportive way by saying that this was the doctor's decision not the families.
I am concerned most that the assisted living community doesn't want her there and have stated that. They should be well trained to know how to work with demanding and manipulative people. That environment will make it harder for her to feel like she belongs. Someone in the Assisted Living needs to "get on her side." In this way, that person befriends your grandmother along with all her foibles. She doesn't take sides on issues but she unconditionally cares for your grandmother even through the tough times. Believe me, it's no cake walk. This is not something that will take a few weeks or even a month. This relationship will have to grow. But if the relationship grows, she is more likely to begin to fit in.
When someone has dementia, by nature of the disease, she will frequently not remember what happened the day before. As a result, much emotional energy can be spent trying to make her understand something she can't recall and doesn't agree with anyway. I would recommend to your Mom and Aunt, to avoid getting sucked into this all the time. Change the subject and move on to something else. If your grandmother continues, they need to just say "I love you but I can't stay here and be hurt by your words, I'll look forward to seeing you later." And leave. I know it sounds harsh but the more she is allowed to be abusive, the more she will do it. The first few times your family has to walk away or stop a phone conversation will be difficult, but they should come back or call back shortly and try a conversation about something else. Unfortunately, because your grandmother has likely behaved in like manner most of her life, it will not go away, but at least, it will help stop some of the emotional abuse.
ELAYNE, Sacramento, Calif.: My husband has been diagnosed with Alzheimer's dementia (actually it's Pugelistic Dementia....and has having a real time with seeing himself in the mirrors and thinking I have let someone into the house. I have covered most of the mirrors, but he looks under the covers, screams at "the man", and tonight tried, with some success to smash "the man" ie, broke the mirror. Is this a normal paranoia? He gets very angry and says he is going to get rid of him with a gun (has none) hammer, or a knife. My question is: what kind of help would you suggest for me when this is going on?
BEVILLE: You are brilliant to cover the mirrors, windows and sometimes we have to cover pictures and TV because they think those people are telling them what to do. The fact that he is pulling up the drape over the mirror is his way of trying to look out a window. It's going to be tough for you for awhile but, you need to buy a picture or pictures that will completely cover the mirror along with other shiny objects and have someone make sure it is secure to the wall.
I'm sure you already do this, but try not to dispute whet he "sees", "that man". It is as real to him as can be. Try to redirect him and start talking about something else, reassuring him all the while. If you see him getting agitated around the house, see what's on TV and if he's looking in a specific direction. People with this disease are sensitive to movement and sound, so keep the TV low or just have music from his younger days when you both were courting. I would also suggest that you get with his Doctor and see if there is anything he can take for agitation, just to get through this. His Doctor can help decide whether this is necessary or not. It is most helpful to the Doctor if you can come to the visit prepared with an average number of times you husband behaves this way, along with the time of day it usually happens. Doctors do better with hard facts instead of blanket statements like, "He gets agitated". If your husband could become offended about a discussion like this, just call the office and have the information faxed for the doctor to review before the visit.
Finally, for now, remove all knives, including kitchen knives, hammers, etc. and use them when he is under supervision and not agitated. If you're like me I will forget where I hid them so make a note to yourself, if you can find that.
CARLOS, Chapel Hill, N.C.: My mom refuses to take any medication. How can we give her medication if she refuses to have it?
BEVILLE: I am assuming your Mom has Dementia or Alzheimer's disease. This issue has been a recurring one for families and Elder Care Communities throughout my career. Different approaches work for different elders and at different functional levels. You can even go to some of the Alzheimer's Websites like the Alzheimer's Foundation or Google care giving of elders with dementia and under that, put refuses to take medication and you will get all kinds of approaches. Bottom line is that there is no "one size fits all" way to handle this. Not knowing the medications and your Mom's functional level would make it hard for me to make a recommendation but there are a few things to consider as you look at options to try:
1. Some days the approach will work and others it won't.
2. Select the time of day when she seems most occupied with something else.
3. Don't make a big deal out of taking the medication because as soon as that happens, you might as well pack up and wait a few hours.
4. Try not to give medication in front of others. In some elder's minds, it is a sign of weakness and they don't want anyone to know.
5. Elders sometimes fear swallowing and choking. If you sense that may be the case, get with her Doctor and see if there is any other way to get her the medication in the Doctor's office or as an injectable, topical or long acting.
I wish I knew more about her, but the internet will be invaluable. I will admit that I did have one patient, several years ago, that I can honestly say, we tried EVERYTHING and nothing ever worked until she got to the place that we could rub a medication on her arm and place another under her tongue.
JODI, Gillette Wyo.: My mother who was diagnosed about 4 years ago with the onset of Alzheimer's is now displaying anger towards my Dad and my brother who is living there to help out. She is extremely nasty one minute and fine the next. She is not violent and still knows everyone, but will not leave the house. Will antidepressant medicine help out with this daily up and down rollercoaster ride?
BEVILLE: This is the worst part of the disease. She is aware that she is becoming more and more impaired and also aware that everyone sees it and she can do nothing about it. It would anger anyone and most likely directed at people close to her. I would suspect that her fear of going out of the house is directly related to a fear of not finding her way back, even if someone is with her, fear that she will run into someone and not know who they are and generalized anxiety at not being in her own environment. For now, bring people to her so she can have visits. This alone may help cut down on some of the swings.
A few words of advice about the visitors. They must be happy people who don't give a flip about the disease. They shouldn't overstay. Short visits are best. If your Mom has a hobby or games she likes to play, have a planned visit, if not, just keep things upbeat. Encourage the visitors to do a great deal of talking. If she gets overwhelmed, nothing is worse than a long silence where she thinks she is the host and has to fill it. When she starts to get agitated or can't seem to stay in one place, gracefully, end the visit.
Of course, I would check with her doctor, make sure you have these mood swings documented for at least several days and when they happen. Document if and when it is suspected that she is showing the signs and symptoms of depression. Depression goes hand in hand in the early/mid part of the disease. Please go to www.alzfdn.org, it will help you see the signs and symptoms. If the Doctor feels it would be a good idea, yes, it could help even out those mood swings and the Doctor may have other suggestions as well. It goes without saying, but be sure the Doctor has experience with Alzheimer's disease. Very important.
D.J., Kannapolis, N.C.: My mother is 67 years old. How do I know if my mother's sometimes forgetfulness is normal, or if it is something that needs to be watched or addressed? What are the chances that she, or even I could get the disease? I will turn 50 years old next week. I'm not sure what definite signs or symptoms to look for exactly. Thanks for whatever insight you can give me regarding this disease.
BEVILLE: The way I feel about the odds is that knowledge is power over this disease. I would recommend the sites below to help answer some of your questions well.
If Alzheimer's disease is in our families, we all start to worry. I really think that some of your fear will be allayed when you go to some of these sites listed below.
Visit www.alzheimers.nia.nih.gov, or send them an email: firstname.lastname@example.org/alzheimers/publications/caringAD