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Alzheimer’s progressively creates difficulty swallowing. This is due to the brain failing to signal the throat to enact swallowing muscles and reflexes. As you imply, this can become a problem and caregivers need to remain alert to the situation at hand. If your father is past the beginning stages of Alzheimer’s, you need to closely observe him when he takes his medication and is eating. Notice whether he chews for long periods of time but doesn’t swallow. Watch for whether he pockets medication or food in a cheek and leaves it there for quite a while. There are some steps you can take if this becomes an issue. First, make sure medication issues are taken care of. Speak with his doctor and see if the medication can be eliminated. If not, see if it is available in liquid form. This goes for vitamins and other supplements, too. However, some liquid medicines might have a bad taste and your father might refuse to take it. Again, carefully observe what he is putting in his mouth and actually swallowing. Another consideration for medications is whether the doctor can prescribe something that can be crushed. Some medicines lose their effectiveness if crushed, so be sure to ask about this. If crushing is OK, you can then mix it into yogurt, applesauce, pudding or something similar. Watch the progression of the swallowing situation and note if it worsens. Remain in contact with the doctor so you can always stay on top of what medications are actually being ingested, which are not making it into your father’s system and which could be discontinued, if necessary. For more information, an excellent resource is “The Indispensable Alzheimer’s Resource Kit.” It can be downloaded at no cost by clicking here.  
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Alzheimer’s is a family disease, so that means it affects everyone. Primary caregivers in particular experience a lot of stress. For this, the first steps are acknowledging it and getting help.   Take advantage of the generosity of any family members or friends who are willing to help out. If you’re one of the many family-member caregivers who don’t have this type of assistance available, look to any of the increasing home- and community-based services that can help afford you a break.   Look for these services nearby:  
  • Adult say services — Clients actually go to these centers for socialization, stimulation and supervision while primary caregivers get a break. Not all centers have experience caring for Alzheimer’s patients so check around.
  • Overnight respite — Many nursing homes and assisted living facilities offer short-term stays with the express purpose of giving caregivers a break. Most do it on a space-available basis, though, so you need to plan and have a calling list ready.
  • Hired caregivers — You can hire a live-in caregiver. Networking can be helpful here. Ask around church or other local groups, such as the Alzheimer’s Association or the Area Agency on Aging, for experienced caregivers who typically work on an independent basis. If no agency is going to be responsible for these caregivers, you must treat this process with the diligence of hiring an employee (which is, in fact, what you’d be doing). Check references, do a background check, get to know the prospective caregiver, see how she or he interacts with your loved one, and don’t be afraid to ask the candidate back to check interaction a second time. You should ask your loved one for input about the candidate. Sometimes people with dementia have keen senses of perception and intuition.
  • Private duty home care — This is for single services or groupings of them on a spot basis. Many agencies offer workers who provide these types of services, which can include bathing, taking to appointments, shopping, sitting, meal preparation and other day-to-day needs.
  But again, it can’t be emphasized enough: If you have family members, friends or others you trust who are willing and able to help, use them.
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It is important to keep a sense of optimism. Another reason to keep a good sense or humor is laughing increases endorphin activity in the brain and makes you feel better. Don’t worry if you think you might have lost your sense of humor forever. It just needs exercise, like other parts of your body. There are numerous ways to do this. Determine what makes you laugh … and then give yourself permission to do it! Try to laugh — a lot and as often as possible. Here are some tips on how to make it happen:
  • Keep a humor file. This might include jokes from the Internet or friends’ emails, newspaper cartoons or anything else that makes you laugh. Keep it in a “go to” place so you can pull it out after especially stressful days.
  • Listen to humor on radio. There are some satellite services nowadays that offer several channels of all-comedy routines.
  • Go to comedies at the theater or cinema. Include your loved one who has Alzheimer’s as long as you can.
  • Consider buying comedy DVDs or videos, or checking them out at your local library. Watch them with your loved one. Laughing together is extremely healthy.
  • Allot time to read humorous books or articles or the comic pages in a newspaper, even comic books if that’s what you like.
  • Invite a friend over and talk about old times. You also can involve your loved one in the conversation.
  • Post humorous photos, cartoons and anecdotes around the house. Be sure to locate them in areas you spend a lot of time.
  • Surround yourself with happy, healthy people who exude optimism and don’t take themselves or life too seriously. It does rub off and affect others.
  • Journal funny things that you might come across during the day, such as something someone said or did — especially your loved one. Later, you can read them and laugh again.
  • Whenever you or your loved one does something funny, laugh. Laughing (at our selves in particular) is fantastic medicine.
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In brief, if you’ve tried to involve other family members with the care of your loved one and they haven’t responded, you have to let it go. You cannot control how another person responds. Also, you don’t need the burden of worrying about others’ actions added to your significant concerns. Many times, family members can be intimidated by Alzheimer’s disease. Others go through denial. Regardless, the fact is they have chosen to be uninvolved and that is their problem. You’ve chosen to deal with it and help out. You have to move on and take care of yourself. When solo caregiving gets to you, seek help. Don’t be afraid to look for support groups, counseling or non-family sources of help even before you think or feel you need it. But when you do get to the totally overwhelmed point, be sure to confide in a trusted friend or look for an area support group, or both. That’s where you can express your feelings. In a group, there is almost always someone who can relate to your situation. Sometimes, you can “adopt” someone new to become a part of your family — perhaps a friend, church member, or acquaintance — and receive help that way. Everyone deals with stressful situations differently. Try to keep your family in the loop as much as possible. Give or send them pertinent information pertaining to Alzheimer’s so they have the means to be knowledgeable and then you have to … let it go. They are adults, capable of making decisions for themselves and living with them.
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It’s not uncommon for an individual with Alzheimer’s to get very attached, or “clingy,” with the person most responsible for his or her care. But that doesn’t mean all of that person’s stimulation has to come directly from you. Try some of these ideas:
  • Play music with a fast pace
  • Let her walk as much as possible
  • Exercise videos with simple instructions are available from numerous companies
  • Have her shred old documents or clip coupons
  • Have her feed a pet
  • Direct her to get mail from the mailbox and open the junk mail
  • Have her set the table while you make lunch.
  • Bake cookies. She can help stir or put the dough on cookie sheets (while you set the oven)
  • Get her some exercise through activities such as batting a balloon or pulling weeds
  • Let her help at whatever level she can. One example: She can hold a grocery bag while you unlock the door to the house
  • Ask a friend to visit and take her for a walk, read to her or play with a ball. Anything that will give you a break for a while
  • Get audio books from the library. People with Alzheimer’s often like to be read to, especially if they’re no longer able to read themselves. You might have to sample different subject matter or genres before finding a good combination. Humor usually speaks to anyone.
There’s also a good publication with suggestions: “Hundreds of Activities for Men and Women with Alzheimer’s Disease and Related Disorders,” by B.J. Fitzray (published by Rayve Productions in 2001). This and other helpful publications are available online at http://www.ahaf.org. Another good site to check is http://www.alz.org, the Alzheimer’s Association website.
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No matter what, you should always try to make him feel like an equal, and like an adult. Include him any way you can in the goings-on of the day. For example, if you need to pay a stack of bills, you can ask him to pick out one that you should pay first. Give him a choice of two. He could also stay involved by stuffing envelopes or putting stamps on envelopes. Then, you can make a trip to the post office part of the routine. The key is you keep him involved, and he’s comfortable with his involvement. Be sure to talk with him. Nod and don’t argue when he talks. Let him answer questions and don’t worry about whether he’s really right or not. Use your sense of humor. If things don’t go precisely as planned, laugh together. By the same token choose your battles. If you must remain firm about something, try to figure out if it really matters if chore “X” gets done. If he doesn’t want to get dressed, is it hurting anyone? Again, treat him with respect and dignity, and like an adult. You can do this by acknowledging his feelings of frustration and loss. Above all, he needs to know you care. Think about how you would want to be treated if the roles were reversed. You wake up one morning and many simple things you could do yesterday you now can’t do. You might not know where you are in your own (long-time) home, or you might not remember how to get dressed, to go to the restroom or how to set the table. Remember to treat this as a person with a disease, not as a “diseased person.” It is an admittedly difficult situation for both of you. Your loved one needs help because he is no longer independent. This means you lose some independence, too. Give yourself frequent breaks. This is obviously a very hard situation. When things get really tough — and face it, there will be those times — take a step back, inhale deeply and then move forward with resolve and patience. Take each moment and each day one at a time. For more information, please click here to download our FREE “Indispensable Alzheimer’s Kit.”
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This can be one of the more difficult aspects of dealing with Alzheimer’s. Beyond its usual challenges, incontinence typically sets in during the middle to late stages of the disease. It can be a permanent or temporary condition. Discuss the situation with your physician. Have him or her check for possible contributing conditions that could be causing the problem. This could include a bladder infection or urinary tract infection. Once health-related possibilities are ruled out, it can be assumed the condition has set in permanently. In that case, it’s time to consider incontinence products. By being prepared with proper adult briefs or other products, your mother can avert embarrassing episodes if she has an accident. Consult a physician or other clinician for how to deal with the incontinence — many people incorrectly stop trying to conduct regular bathroom visits just because their loved one is wearing a brief, for example. When a brief gets wet, it should be changed as quickly as possible, to avert skin irritation and breakdown. At this time, the skin should be thoroughly cleaned with a wet cloth and dried. Red or irritated skin can be a warning sign of further problems down the line. Observe this condition closely! Should sores begin to develop, seek immediate medical help! Nothing good comes of compromised skin integrity, and once it starts to go, it can be a quick decline. If your mother sits in one place for long periods of time, have her shift positions frequently to redistribute the pressure on affected areas. The weight should be repositioned somehow so it doesn’t remain in the same place for too long. Get your mother up and have her walk — even a short distance — around the house or yard. This will relieve pressure bearing areas and get blood recirculation, both of which are very helpful. Changing chairs and lying down (if previously seated) also can be helpful. If her physician writes an order for an evaluation from a home health agency, take it seriously. The agency can make home visits. A nurse will take stock of the overall situation and set a plan of action in place accordingly. These recommendations should help everyone involved — your loved one as the “patient” and you and others who are caregivers. More success will mean less stress, and that, too, is very desirable. For more information, please click here to download our FREE “Indispensable Alzheimer’s Kit.”
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Good communication can help many problematic situations and behaviors, and even sometimes negate them. The No. 1 tip you can learn on this topic is to treat a loved one with Alzheimer’s as an individual with a disease, not as a diseased individual. The person has an entire, personal, individualized history that will stay with him or her throughout life’s journey. Some characteristics will never leave; some will become more pronounced. A high-anxiety person could still be tightly wound, while a laid back person could become even more so. Everyone needs to have his or her feelings validated, and individuals with Alzheimer’s are no different. In fact, they might need it even more, given their likely memory loss or possible insecurity issues. Here’s an example: You mother, who has Alzheimer’s is angry with your wife a lot of the time. They were on good terms in the past, but now she blames your wife for everything. You have to keep in mind that it is the dementia talking, not your mother. You can validate her feelings by saying, “I don’t blame you for being angry” and then move on. What she feels is real to her (even if it’s not true) and you should at least afford her some validation. Of course, you might have to coach your wife at this point, too. Reinforce that the comments and action aren’t necessarily against her at a personal level. It’s the nature of this devastating illness and, in the long run, is only a temporary condition. People who have Alzheimer’s respond well to affirmation so be generous with the praise and comments such as “good job” or “way to go,” etc. Here are some other tips to conducting good communication with your loved one (or anyone) who has Alzheimer’s:
  • Identify yourself when you begin a conversation. If he says he knows already, laugh and joke it off
  • Maintain eye contact when speaking
  • Slow down when you talk
  • Use short sentences
  • Smile and be pleasant
  • Be aware of her body language. A sudden change in position (i.e. sit-to-stand) could indicate the need to go to the restroom, or another form of discomforts
  • Be aware of YOUR body language. Try not to appear tense, upset or intimidating. Remember: The majority of communication is conveyed non-verbally
  • Don’t argue
  • Ask only one question at a time. Give enough time for responses. Yes/no questions are the best
  • Don’t talk about your loved one as if she or he weren’t there — you can never be sure of just how aware she or he might be. Also, don’t be condescending or order the person around
  • Try to avoid a high-pitched tone of voice. It could be interpreted as anger
  • When your loved one is upset and communication between you just isn’t working, try a hug. Soon, anger should be forgotten and you can try again
  • Use gentle touches to get your love one’s attention if necessary. You can try by putting your hand on his shoulder, knee or hand
  • Eliminate any noise that could be distracting, such as TV or radio. Go to another room to talk if it would be helpful.
  For more information, please click here to download our FREE “Indispensable Alzheimer’s Kit.”  
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“Sandwich generation” refers to individuals or families that find themselves raising not only their children but also parents or other elderly relatives, often while also holding a job. This obviously is a complicated scenario and can be very stressful for everyone involved. The oldest might become harsh or impatient with the younger members of the household, and vice versa. The younger ones might feel as if their grandparents are encroaching on “their” space. Trying to be a primary caregiver in this environment can be an especially complex minefield, and it is highly recommended to join a support group to obtain some coping strategies. In addition to this, you might want to look up a support group for children of people with Alzheimer’s. The type of “blended” family described above can work, despite any battles that might break out. One place to find some assistance is the American Health Assistance Foundation, which has a number of very helpful publications. The national Alzheimer’s Association also has many resources. Its contact center is available 24 hours per day at (800) 272-3900.
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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.
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