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There are several groups that can give you a list of private-duty agencies that provide in-home care in your area, including: the Alzheimer’s Association, your Area Agency on Aging, Department on Aging, and Social and Rehabilitation Services. You can find a wide range of abilities and offerings, from aides to sitters and homemakers. They can perform specific or general duties. If you need skilled care or a nurse for something specific, you should contact a home health agency, or speak with a local healthcare provider such as a skilled nursing facility or hospital, which might have referral groups or divisions that they themselves operate. Typically, a physician must be involved when setting up skilled services. This encompasses any nursing, physical therapy, occupational therapy or similar services. So check with the physician’s office for more referrals. Another great place to find information and referrals is through fellow members of a caregivers’ support group you might be a part of. You also can attempt to hire an individual on your own. There are many individuals who work independent of any agency. But quality varies and while you should screen any direct caregiver or therapist, you must really check out any individual you might hire on your own to provide in-home care. Groups such as the Alzheimer’s Association have lists of individuals for hire but they typically will pass along only feedback they have received about caregivers, and not make recommendations. There are many variables involved, so you need to take appropriate caution during this process. You must treat this as what it is: a business or employee-employer relationship. Use an application form, even something generic like those that can be found at office supply stores. Obtain a copy of valid identification cards, such as a driver’s license, Social Security card and anything else that might indicate stability and training, such as a certificate for nurse-aide training. Since we’ve established this is an employee-employer relationship, ask for a resume and references. Any reputable caregiver will have them and be glad to give them to you. Interview more than one candidate. It’s the only appropriate thing to do, unless you are under extremely odd circumstances. Schedule a time when each candidate can spend some time with your loved one in his or her living setting. Notice how the two interact. Is your loved one comfortable with this person? Be sure to include your loved one in the process. It’s widely observed that individuals with dementia seem to have a “sixth sense,” so to speak, about judging people. So be sure to let your loved one have a say before you make a hiring decision. You might need to hire a certified nurse aide (C.N.A.). They take care of basic but important tasks such as bathing, dressing, feeding and administering medications on time, in the proper quantities, etc. They must undergo a significant number of hours of formal training and typically have experience dealing with individuals with Alzheimer’s. Another thing you’ll want from your caregiver is proof of CPR training. Get a copy of their certification. Once you have hired someone, the process isn’t over. Keep good records, including identification slips, background check results, copies of certifications, etc. Make sure your new employee is appropriately oriented to your house — and to any special needs or preferences your loved one has. Give detailed instructions about routines since people with Alzheimer’s seem to do better with familiar patterns of activity. Suggest activities and interests your loved one enjoys so the caregiver can get started on incorporating those, or expanding upon them as possible. Nurse aides also can help with chores around the home, such as cleaning or cooking. But if that is all you will have them do, then hiring a homemaker specifically for these tasks would probably be a better, more economical idea. Realize that, in some states, paying an individual to take care of your loved one (with proper care contracts in place) might cause Medicaid eligibility issues. You should consult an elder law attorney to be clear on this.

The difference in relationships matters. Non-relatives sometimes have easier access or more cooperation precisely because they are NOT family members. Many times, loved ones are harder on their relatives than anyone else. Your mother probably feels she can act however she wants around relatives. Sometimes, loved ones don’t have good relationships to start with and this is just continuation of that dynamic. But usually a person will be on his or her best behavior for someone outside the family. That’s good news for aides, doctors and sometimes even strangers with whom they interact. Sometimes all the family contact, and familiarity it brings, is too much. You both might just need a break from one another, having spent too much time together already. This is not something you should take personally. Your mother still loves you. Just remember that she has a form of dementia. Many people don’t realize that almost all inhibition is eliminated with dementia. It’s a bit of a mystery, frankly, how some people can maintain such good manners with someone who is not as familiar with them as you. It’s important for caregivers (such as yourself) to learn to let things go. You should weigh things such as: If all she wants to eat is chocolate pudding, is it hurting anyone/anything? If she wants it for breakfast, it might not be the most nutritious thing for her, but it’s not going to harm her (unless medically contra-indicated, of course).  Learn to step back and evaluate the overall implications of odd requests or off-plan behavior. Choose your battles wisely. Often, if a loved one with Alzheimer’s doesn’t want to eat or dress or do some other common task, she or he will cooperate when you ask again later. For more information, please click here to download our FREE “Indispensable Alzheimer’s Kit.”

Even if an abuser has Alzheimer’s disease and can’t control his temper because of it, it is still difficult to put up with. But you can’t take it personally.  If his behavior is merely an extension of the way he used to treat people, you at least know what is happening. But if it’s a full personality change, it understandably could come as a shock. It will likely signal a period of mourning, where you will have to come to a point of acceptance that there has been a dramatic change.   Give your mother breaks since she is otherwise with him all of the time. It might mean hiring someone to come in and be with him, or using an adult day care center, or having family members rotate in. But you must realize that your mother needs breaks. The odds are he will act differently with non-family members. However, if he still verbally abuses home care workers or staff at the adult day care center, you have a bigger problem. Then, it might be time to get the doctor involved. See if the doctor has any suggestions — he might suspect depression or anxiety is in play and prescribe something for it accordingly. Often, Alzheimer’s patients act out due to an underlying cause such as depression, anxiety or pain.  You also can deal with this volatile situation with humor. You can’t control how your father acts out, but you can control your responses. The staff at one adult day care center simply refers to harsh words or verbal abuse as its “terms of endearment.”   You also might want to openly acknowledge your father’s feelings to him. This could lessen his frustration level. A person with Alzheimer’s loses so much independence, he may rail against those nearest to him, especially if he’s receiving different sets of advice or orders from different people.  Would-be advice givers need to be careful that they offer suggestions and directions in a non-threatening way. If your father resists, don’t press him and go back to the topic later. After an informal cool-down period, you may have better luck. To have success, you should also not talk down to him. He’s an adult and has his own personal history of independence and success. That should not be discounted. Your father will sense if he is being treated differently.   Another solution for you caregivers is to join a support group. Very often, there will be others in a group with the same or similar problems. They can either give you successful strategies or simply the comfort and understanding that you need to know you’re not alone in this battle. You and your mother also should journal feelings and frustrations about your dad’s behavior. By dealing with your feelings, you’re better able to help your father.  To find a support group near you click here.

This is a very good question because routines are very, very important. A steady routine will be familiar and comforting as a person with Alzheimer’s progresses into the disease and loses more memory. If you live with your loved one, make everything a part of a schedule or routine if possible. You should do this for both of your sakes.   Rituals, such as at bedtime, are critical. If your loved one always ate something particular before bed, or checked a door(s) or performed some other task, you should continue with it. If your loved one becomes restless before bed time or is having a hard time getting to sleep, allow him or her to get up and do anything in their ritual. This will help the person feel at home. To reiterate rituals and routines are very, very important.  A daytime routine might include specific medication or eating times, checking the mail, bathing, going to get a haircut, grocery shopping with you and just about anything else you want to include. Putting drinking water into the routine is great because it can add to a sense of process but also keep a person with Alzheimer’s hydrated, which can sometimes be an elusive task. You both should also be sure to include relaxation time in your regular schedules. Some other good things to include in a daily schedule could be: feeding a pet(s), folding laundry, reading the newspaper, going for a walk or drive, taking out the garbage, getting a snack, drinking coffee, etc.  It might be difficult, but while trying to keep a steady routine, you have to avoid becoming too rigid. If the activity you had planned isn’t working out well for your loved one, be flexible and don’t argue. Move on to the next thing and go with the flow. If you have an activity that simply must be done (such as dressing), take a break from it and try again late. For more information, click here to receive our FREE “Indispensable Alzheimer’s Resource Kit, ” which has additional information regarding caregiving issues.  In addition, attend an Alzheimer’s Support Group.  To find one in your area click here

Yes, it can — but probably not the way you think, or may be hoping for. What Alzheimer’s can do is essentially erase bad behaviors or attitudes, which fall by the wayside as memory and decision-making abilities fade. When something like alcoholism, bipolar disorder or schizophrenia is present before the onset of Alzheimer’s, it “goes away” as the disease progresses. This has led some people who have loved ones with Alzheimer’s to say dementia or Alzheimer’s has “blessed” the person. If the victim was abusive or harsh beforehand, he or she might become happy, loving and docile afterward. Sometimes the families can joke about having a support group for people who are happy about Alzheimer’s. One man had an alcoholic wife for most of their 50 years together. This included the rearing of six children. As Alzheimer’s symptoms started to take more and more control of her mind, she forgot to drink and became more loving and soft-spoken. It was as if the dementia had brought out the best of her. She showed sides of herself that close friends and relatives had not seen in many years. Her children liked visiting, and she was kind to them. She also showed a good sense of humor. Often, her husband said those years were some of the happiest times of their married lives. In some ways, he was grateful for the dementia that claimed his wife’s mind. He went as far as to suggest that the disease had given him and his wife a second chance to live together happily. She stayed in their home, and he was her primary caregiver until her death. Alzheimer’s is a tragic disease, but sometimes it brings blessings.  For more information, check out our Indispensable Alzheimer’s Resource Guide which is available FREE online by clicking here

Nonverbal communication is important, more so perhaps with someone who has Alzheimer’s or dementia than with others. That goes for communication in both directions: from you and to you. Body language can be responsible for up to 80% of all communication. It is very important therefore, when communicating with our loved ones to do more than just get the “right” words. Facial expression and tone of voice are a big part of your message. Alzheimer’s patients are still sensitive to people around them and can be rather intuitive. They know when someone is not being sincere. Similarly, they can be very aware if they’re being excluded from something or being talked down to. People with Alzheimer’s can sometimes look into your eyes and seem to read your soul — like a “sixth sense.” Be aware of the body language they may be sending your way. Bouncing up from a chair and pacing around could indicate, for example, that a visit to the restroom is warranted. Or it could be an indicator of some type of pain or discomfort. Always keep in mind that pain could be a part of the equation. As for calming your loved one’s agitation or anxiety, sometimes less is more — as in talking less, or not at all. Sometimes you don’t need to say anything. Touch is an important part of the human condition, so resort to hugs and gentle touches on the hand, arm or shoulder often, if you can. A simple hug can dramatically change a person’s mood instantly. Sometimes, an angry caregiver might not want to give a hug, but that’s the time when your loved one might need it most. Embrace her, and the opportunity to improve one’s existence. It might be stepping out of your comfort zone, but the results could amaze you. A hug can release tension immediately (in your loved one and you). A gentle massage or back run also can soothe the mood and have a relaxing effect. For more information, download the Indispensable Alzheimer’s Resource Kit which can be obtained at no cost by clicking here     

An important part of any type or relationship is communication. An often tough task becomes increasingly difficult, however, when a person with dementia is involved. Both processing and expressing information become more difficult, which can lead to frustration, which can ultimately manifest itself as agitation. Anything from mere pacing to lashing out can be a sign of agitation. As a caregiver, you want to avert agitation as much as possible. Effective communication can help. Below is a list of ways to improve communication. It is by no means complete, but if you follow these tenets, you’ll be doing well:
  •  Talk with a calm presence
  • Don’t argue — you’ll never win
  • Validate feelings
  • Smile and be pleasant
  • Approach from the front so you don’t startle your love one
  • Identify yourself, if needed
  • Maintain eye contact
  • Ask one question at a time
  • Go slowly. Remember that hurrying heightens frustration
  • Use short sentences
  • Give plenty of time to respond
  • Repeat information as needed. Repetition is good and usually helpful
  • Use touch, such as on the shoulder, knee, back or hand
  • Give hugs — many times a day
  • Laugh together
  • A high-pitched voice might convey that you are upset so speak with a lower tone when possible
  • Speak clearly and directly (and, to repeat, slowly)
  • Don’t correct your loved one
  • Ask things nicely: Don’t make demands
  • If you feel your words becoming heated, stop. Take a deep breath. Try again later
  • Don’t take adverse behavior personally.
  • Respect the person as an adult; don’t talk down to him or her
  • If he or she cannot find or make the words, gently finish a sentence as needed.
  • When at all possible, allow choices — such as “Should we pay the gas bill or electric bill first?” or “Would you like tea or coffee?” etc.
  • Frequently praise your loved one and spread affirmation — for even the smallest things. Make phrases like these a frequent part of your vocabulary: “Thank you,” “Good job!” and “You’re the best!”
For more information, be sure to downloard the Indispensable Alzheimer’s Resource Kit which is available at no cost to you simply by clicking here.

The quick answer: yes. A doctor must be consulted for a full evaluation as soon as you notice the first symptoms of dementia —more than just mild forgetfulness or confusion. This type of professional check-up will help determine why the symptoms are present. Are they due to depression? Poor nutrition? Drug use or alcohol abuse? Organ dysfunction?  If your loved one has never been evaluated for dementia before, your best bet is to consult a neurologist or geriatrician. For those who have been diagnosed with Alzheimer’s, a geriatric psychiatrist should be contacted for signs of anxiety, depression, agitation or any other behavioral issues. You must be comfortable with any physician you use, especially since you’ll likely get into very personal lines of questioning. Remember: Everyone is different, so a doctor who might be appropriate for a friend might not work for you. That is OK and you should keep looking if you’re not satisfied. Doctor referral services can provide a list of appropriate physicians. It is often comforting to know you are using a doctor whom others have used and liked. Caregivers also might receive information and referrals at support group meetings so look into those, too. The reason it’s so important to get an early diagnosis of dementia is it can make treatment easier and more effective for all involved. Most importantly, it can lead to appropriate medication that might help slow the progression of the disease. An initial, thorough check-up should include a physical examination, medical history, neurological tests, laboratory tests, brain imaging and function tests. An individual diagnosed with dementia will see a geriatrician, neurologist or psychiatrist for any issues directly related to the dementia. But a patient should inform his or her primary care physician of the diagnosis, and continue with the doctor for general check-ups. Experts agree the best proactive strategy to achieve successful caregiving at home is to have a healthy caregiver. Alzheimer’s truly is a family illness. A doctor needs to be aware of the caregiver’s stress level and be willing to offer support, suggestions and encouragement. The best doctors in this field will be concerned about the health and well-being of the caregiver.  

New Rules As you may have read in recent columns, Illinois has adopted new rules for Medicaid coverage for long-term care for our citizens and the state of Illinois (“DRA”). These new rules took effect January 1, 2012.  The new rules are going to require that our clients engage in what we call “Five-Year Planning.” This “Five-Year Planning” has become  necessary because of the fact that there will be a new five-year lookback for all Medicaid applicants when there are asset transfers that take place after January 1, 2012. The Silver Lining What may come as a surprise to many of our clients is that the unintended consequences of these rules may be that long-term care planning for our clients may actually be enhanced in some ways. The silver lining in all of this is that while the lookback period and the need to plan further in advance is one of the negative aspects of the new law, the need to use trusts of a very specialized type in order to comply with the five-year look back may actually provide some very positive consequences. How to take advantage of the New Rule Following is an example of how the new rules could work in your favor.  Instead of leaving assets for their children outright, parents can now consider leaving assets in trust for their children. Leaving assets in trust for children carries with it the following benefits:
  1. the ability to protect the assets inherited by a child from the creditors and predators of the child, such as divorcing spouses, business creditors, tort creditors, etc.;
  2. the ability to allow the management of the assets to continue under the supervision of the parents’ financial advisor who may have assisted the parents over the years in accumulating a critical mass of assets that can provide for many years of security for the children;
  3. the ability to meet the five-year lookback requirement of the new Medicaid laws;
  4. and, finally, the ability to prevent the children from squandering or losing the assets that the parents carefully accumulated during their lifetime.
We are currently experiencing the greatest intergenerational transfer of wealth in the history of the world. However, there are often problems with transfers of wealth. Quite often, the parents pass away and the baby boomer generation will take funds in what used to be a well-managed and profitable brokerage account, and the money is randomly moved or, worse yet, squandered shortly after it is received. So I often ask both our clients and their financial advisors if they would  be interested in establishing a systematic relationship for the management of assets so that a client’s family can continue to retain the benefit from financial management even after parents pass away? The recent adoption by the state of Illinois of the DRA will provide an entrée and solution to this problem for all. In the past, this was sometimes difficult to do. The opportunity to avoid the unintended squandering and loss of assets at the death of the parents now exists with the increased usage and importance of so called Five- Year Planning as part of our “senior” estate planning process.  This planning always existed, but is now more critical than ever, with the passage of DRA in Illinois and the required “5 year or 60 month lookback period.” My preference is to work with clients and their advisors  who appreciate the wisdom of keeping client assets protected from creditors and under  management of the financial advisor. Call To Action If this interests you, then please call my office so that we can schedule a time to meet and I can discuss this new law with you. I think you’ll be amazed at the opportunities that the law presents to the older generation, as well as to the younger generation. You have our best wishes for the new year! I hope to speak with you soon.

Because Alzheimer’s affects individuals in different ways, at different rates, with different symptoms and at different times, it is impossible to say that no one with early-stage Alzheimer’s will ever lose the ability to talk. But it is not likely. If loss of speech happens at all, it is typically occurs in mid- to late-stage Alzheimer’s. The brain deteriorates and systematically starts to shut down certain body functions, one of them being speech. At first, a person might struggle with words, and then phrases or concepts. Eventually, entire sentences could be lost. There is also the possibility that someone will talk gibberish: He or she could be talking in full sentences but the words make no sense. Complications of neurological diseases such as Alzheimer’s could include mini-strokes, which could lead to the loss of speech. These mini-strokes, also known as TIAs (for transient ischemic attacks), are not uncommon in people with dementia. Sometimes, strokes come first and a person develops dementia secondarily. Severe strokes can result in the loss of speech. In these cases, time spent with a speech therapist can result in regained speaking abilities. It’s important to consult a doctor if speech is lost soon after a patient’s dementia/Alzheimer’s diagnosis. And, as always with such professionals, if you’re not satisfied with what you hear or how you’re treated, keep looking until you are. Consulting a specialist such as a neurologist is very important, too. Mini-strokes often may be too small to detect with an MRI, experts remind. Doctors who are experienced will be able to determine diagnoses through observation and interviews with family members. Although it is not common to lose speech with early-stage Alzheimer’s, you should always consult your physician whenever a medical condition like this is in question. Remember: Alzheimer’s treats people uniquely. While some characteristics — such as memory loss and insecurity — may be common, some symptoms may never appear in certain individuals. There are, for better or worse, few definites with Alzheimer’s. For more information about Alzheimer’s and how it might affect a loved one, check out the free, Indispensable Alzheimer’s Resource Kit from The Law Offices of Anthony B. Ferraro, LLC.