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An advance directive is a form of direction that allows a person to express healthcare preferences in the case that person becomes unable to make or communicate his or her own decisions. Advance directives include a host of options, such as power of attorney for healthcare decisions, living wills and informal directives people make in letters, conversations and conduct. Any advance directive must be signed while a person still has approved mental capacity to sign legal documents. All people have a constitutional right to refuse any medical treatment, including ventilators and feeding tubes. This was determined by a Supreme Court decision called Cruzan et ux v. Director, Missouri Department of Health. There are also state laws that authorize an individual to name a person to make healthcare decisions for when he or she is unable to do so himself or herself. Advance directives are intended to ensure that a person’s wishes are known — and followed. Among other things, they allow a person to state wishes regarding the potential use of life-prolonging procedures. The necessary documents will be most helpful to survivors if wishes are discussed ahead of time with family members, friends and healthcare providers as part of advance care planning. The most common healthcare directive is the Power of Attorney for Health Care Decisions. It allows you to appoint a person to make healthcare decisions if you are incapacitated, and it also allows one to state wishes about issues such as life support and organ donation. The document would go into effect only when the creator of it cannot make or communicate decisions for himself or herself. When a person completes an advance directive, copies of it should be given to corresponding physicians, family members, clergy, attorneys, friends and other appropriate people. The details of the directive should be discussed. Whenever the person is hospitalized, a copy should accompany him or her. The person also should ask the doctor to make it a part of the permanent medical record. Contrary to what some might believe, an advance directive is valid in any state. However, because there are state-to-state differences, it is recommended that people have documents drawn up, witnessed and notarized in the state where they live. Advance directives then stay in effect until the creator’s death, unless that person revokes it ahead of then.
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First off, a support group is not necessarily for everyone. BUT for most Alzheimer’s family it IS a godsend. There are many types of groups you can join. You need to find one that makes you feel comfortable. They typically have a special theme or focus, such as for spouses, adult children, caregiving aspects, etc. You should find a group that meets at least twice a month to get the best benefit. You also might consider a group that generally discusses caregiving issues. Most issues with caregiving are similar, no matter what the disease. Some issues confronted might be frustration, guilt, anger, fatigue, finances, physical challenges such as incontinence and so on. The goal of a support group is to give you a confidential, secure way of expressing your feelings and concerns. This can lessen pressure or anxieties you might be feeling. The caregiving you’re doing is a difficult job, one that nobody really asks for. You don’t volunteer for it but are volunteered for it, so to speak. Sharing with others who identify with your situation can be affirming, comforting and validating. You also can talk to the group to find solutions to problems you might be having. Odds are that someone else in the group already has experienced a similar problem and can relate to it, and probably supply a practical solution. The individual with Alzheimer’s also can benefit from being part of a support group. He or she needs to talk about feelings and experiences with the disease. Joining a support group can help lessen frustration and anger. Members of such groups talk openly about having the disease, what to expect and how to plan for it. Therefore, the participant must first be aware of his or her diagnosis to take part. Support groups for patients themselves is a fairly new concept so you might not find them as readily available as those for family members. So far they have typically been more common in larger metropolitan areas. Keep in mind that if you live in an area that does not have a support group, there are groups established online. One example is The Alzheimer List, which is sponsored by the Alzheimer’s Research Center in St. Louis and can be found here.      
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First of all, for family members: When you first admit a loved one to a nursing home, you should get to know the staff. Let them know that you care about their well being (in addition to your loved one’s) and that you would like an open relationship so you all can discuss issues concerning your mother’s care. Inform them about pertinent information concerning her and her life — what she likes, dislikes, any habits she might have, typical moods, and what seems to work when approach her in different situations. The more her caregivers know, the better they can care for her. Compliment staff members when you learn about them doing something you like. Be involved at the facility as much as possible. Attend social events and family council meetings if you can. One good example of relationships being built very well involves a man who took a picture of his wife and the staff on her unit. He had an 8-by-10-inch shot of it made and wrote the name of each caregiver underneath it. When placed on his wife’s closet door, it served as an aid to helping her recognize the people taking care of her. It also made the staff members feel very included. It made them feel important and let them know that the family really cared about them. This gesture built a lot of good will and enhanced his wife’s care. To the staff: Don’t be intimidated by residents and/or their families. You are the frontline worker, an honorable position. Without you, there would be no care for their loved one. That is a compliment of the highest order. Show interest not only in the resident, but also his or her family. Introduce yourself and tell them a little bit about your background, your interests, how long you have been a caregiver and why you are in that line of work. When family members enter the unit, greet them cheerfully and give them information about their loved one, whether the news is good, bad or indifferent. What many caregivers don’t think to do is call a resident’s family if something good happens during the day. These are blessings that can be few and far between for family members, and they’ll go a long way. Unfortunately, there can be stigmas about nursing homes and their caregivers. For the most part, these workers are intent on doing a good job and truly care about what they do and who is in their charge. Everyone needs to work together to overcome negative stereotypes so residents will have positive experiences in their new home.
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When your father or any loved one starts to ask about home, someone could drive them past a previous home, even from childhood. Often, he will not recognize the old house because a house and a home are two different things. That’s why it is best to make him feel safe and secure, regardless of wherever he is. To most people, “home” is a place where we feel loved and accepted — and safe. So the best way to answer your question is to think about the word “home” and what it signifies. Depending on where he is with memory loss, your father might be conjuring thoughts of a childhood home with his parents and siblings. Or the home where he was first married, the kids were young or any time before, after or in between He might be living in the same home he’s been in for 20 or 30 years and still ask to go home. Due to the nature of Alzheimer’s, your dad is likely feeling insecure, fearful, even unlovable. Please pay close attention to this next point: It is not your fault. He is dwindling a bit, day-by-day, and he is frightened. Fear can drive many emotions, not the least of which are insecurity, anxiety, anger and low self-esteem. Your father needs to feel safe. If he doesn’t carry good feelings about himself, he probably doesn’t feel he can be loved by anyone. Remember that the most important thing to realize is you need to constantly validate his feelings. Instead of telling him he is home, tell him simply that he is in a safe place and that he is loved very much. You can tell him, for example, “Dad, you’ll be staying with me and Anthony for a while. We’re happy you’re here and we love you.” Reminiscing about his childhood and looking back at his life and life accomplishments also should make him feel good about himself and decrease negative feelings. Because Alzheimer’s patients typically have short-term memory loss, he will nonetheless continue to ask about “home.” Repeat over and over that he is in a safe place and loved very much. Giving hugs throughout the day will truly say much more than words. A hug produces feelings of love, acceptance and security — three big concepts that continually need addressing.  For more information regarding how to treat a loved one with Alzheimer’s, click here.
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It applies only to married couples and is a phrase commonly used for the Spousal Impoverishment provisions of the Medicare Catastrophic Act of 1988. It changed the eligibility requirement for Medicaid in situations where one spouse needs nursing home care and the other doesn’t. Basically, the law says that it makes no sense to impoverish both people when only one needs to qualify for Medicaid coverage for nursing home care. Because of this distinction, “division of assets” was created. This is basically how it works: The couple gathers all of their non-exempt (countable) assets in a review. Depending upon the rules of your particular state, exempt assets are usually: the home, personal and household belongings, a single vehicle, burial plots and irrevocable funeral plans, the cash value of life insurance (for cash surrender values up to $1,500 only) and cash (the amount varies from state to state). These non-exempt assets are then divided into two, with the at-home (“community”) spouse allowed to retain one-half of the assets, up to a maximum of about $110,000. The other half of the countable assets must be “spent down” until a certain amount remains. The amount varies from state to state. This amount of countable assets that the at-home spouse gets to keep is called the Community Spousal Resource Allowance (CSRA). The at-home spouse is given a monthly income floor, which is established by states individually. This is called the Minimum Monthly Maintenance Needs Allowance (MMMNA). The community spouse is allowed to keep a minimum monthly income ranging from about $1,750 to about $2,650. In the case the community spouse doesn’t have an income of at least $1,750, she or he may take income from the nursing home spouse in an amount large enough to reach the MMMNA bottom threshold. The nursing home spouse’s remaining income (minus a persona-needs allowance) goes to the nursing home. This can help the community (at-home) spouse avoid having to dip into savings each month, which would gradually bring impoverishment. If you’re in this situation, you should seek advice from someone who knows Medicaid law intimately well. You can find elder law attorneys in your area by visiting www.NAELA.org, the website for the National Academy of Elder Law Attorneys.  You can also find more information about Medicaid by clicking here.
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This can be a tricky subject. There is a lot of negative information circulated about feeding tubes, but they also can serve a legitimate, helpful purpose. First off, if your father has an advance directive, review its contents for guidance about his wishes regarding a feeding tube. Be sure to speak at length with his doctor about this issue. Sometimes other interventions are possible, such as speech therapy. Speech pathologists and therapists can introduce special swallowing techniques. However, the patient must be aware enough to understand instructions and carry them out. Discuss the different kinds of feeding tubes with your loved one’s doctor. There are numerous types and each should be explored. Some of them require more invasive procedures than others. Less invasive means less stress for your father. The doctor also should be able to explain the risks of using a feeding tube — and what the risks are if one isn’t used. Don’t hesitate to get a second opinion about feeding tubes. They are frequently an uncomfortable topic. Even if you have used a doctor for many years and trust him or her, it never hurts to get a second opinion. You need to be at peace when you make a decision about a feeding tube.
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You better go talk to the physician involved before you assert yourself here. Also, discuss this with the speech therapist to find out what type of therapy work your mother is undertaking. The therapist should have her individualized care plan available to discuss. It should include a goal and various steps for meeting it. Speech therapy does a lot more than most people realize. It is not just about talking more clearly. Some of the most important work may have to do with swallowing issues, which can be quite dangerous if not addressed appropriately. As Alzheimer’s disease progresses, for example, swallowing becomes more difficult, sometimes to the point of being life-threatening. Choking is a big concern. Speech therapists can assess such situations and apply therapies as needed. Rather than just having a person form sounds and letters, speech therapists also conduct swallowing tests on people with dementia — sometimes with the use of X-rays. These can help form care plans. It is easy to see why an Alzheimer’s patient might not understand all of this. You probably will want your mother’s doctor to explain the seriousness of the situation to her, and why the speech therapy is needed. Then, if your mother complains in the future, you can rely on the authority of the doctor. You also will both be more knowledgeable and familiar with the reasons for speech therapy.  For more information from the Alzheimer’s Resource Kit, click here.
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Often, as Alzheimer’s progresses, a person loses his or her appetite. Getting the person to eat can be a constant struggle. This is, in fact, one of the great challenges that Alzheimer’s caregivers face on a regular basis. It might be helpful to serve Alzheimer’s patients food on brightly colored plates and drinks in brightly colored cups or glasses. A study in a recent edition of Clinical Nutrition magazine revealed that when nursing home Alzheimer’s patients were served food on bright red plates, with red cutlery, they ate 24% more than when served on white plates. Similarly, bright red cups led to 84% more liquid being drunk than out of plain glasses. It’s a little-understood fact about Alzheimer’s that as the disease progresses, the ability to process all types of information is often lost. Outwardly it might seem obvious and easy for a person to recognize food on a plate, but it can be a challenge for an Alzheimer’s patient. So if other strategies for encouraging or cajoling more eating and drinking have failed, try serving food on bright red plates and putting beverages in red cups to encourage greater consumption.  To learn more, try the Alzheimer’s Resource Kit, click here.
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Having a leader from each department is a very good idea. The more the communication, the fewer the problems, in theory at least. When you hear from the department leaders, it will give you a good picture of their responsibilities, and why they do what they do. It’s not always clear to us and can lead to unanswered questions otherwise. Sometimes, there are health department, state, federal or other regulations in place. It’s easier for you and other resident families to deal with when staff members’ routines make more sense. Work on building relationships between staff members and the residents’ families. Invite different staff members to attend your meetings. Remember that nurses and other direct care personnel are very important — not just the department heads. They are usually the ones doing 90% or more of the hands-on caregiving with your loved one. You better believe their input is important. As a group, a family council can develop a method(s) for more effective communication with facility staff if a complaint or concern arises. When something does come up, it then ought to be less threatening for everyone to sit down and resolve it. The council also should consider developing a good way to deliver compliments to staff members, via proper thank-you notes, for example. Plan for picnics or other get-togethers so staff, residents and family members can spend relaxed time together. Treat everyone as family. The council should not simply become a gossip or complaint forum. The meetings also should be structured and effective since nobody wants to waste time — staffers and non-employees alike. For more ideas on what you might do or include, you can call other facilities and ask how they run their family council meetings. Best of all, speak with the actual officers of the family councils at other places, not just staff members or directors.
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This depends on a number of factors. If he is considered a high-risk case for wandering and the provider is admittedly not suited to deal with it, then, yes, he may be incorrectly placed. But if this was a first or “one-time” incident and staff members say they can handle it from here on out, try to keep your father where he is. It’s good for him to remain in familiar surroundings. (If you think the facility simply is not living up to its care obligations or has been derelict in its duties, then looking for a different facility would be advised.) Having a person with Alzheimer’s disease move can often be traumatic. What makes this predicament particularly difficult is you can’t typically determine if your father is going to wander until the first time it happens. A facility can be caught off-guard by this but then can recover by ramping up supervision to responsibly take care of him. The facility might, in fact, have a very good resident monitoring system available or in place but did not think to tell you about it because your father wasn’t yet deemed a wandering risk. You can do a little research to help determine the next step. Speak with the facility’s activity director to learn whether your father takes part in activities. If he doesn’t or doesn’t take part much, ask the director to get him more involved in either group of individual activities. This will help keep his body active and his mind stimulated, diverting some of the energy that would be used for wandering. Exercise is a good way to spend excess energy You also can look into engaging private duty or sitting services. Consult facility staff about having someone come in to spend one-on-one time with your father. This would still not guarantee against wandering (due to the nature of the disease) but it would be another proactive measure against it. Have all caregivers track whether your father tries to leave the facility, and if staff members are able to prevent or counteract it. If they can’t prevent it, you might need to explore other options. Also consider: Does your father seem anxious or extremely agitated? His doctor might be able to do something about this with an appropriate intervention. There is also the chance that your father may remain agitated enough to wander no matter where he is. Be sure to keep his doctor up to date on the situation. For more information, go to our Alzheimer’s Resource Kit by clicking here.
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