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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.

This is a great question. The staff at the facility might ask you to stay away for the first few days in order to minimize confusion and let your loved one get acclimated to new surroundings and routines. If this seems harsh, know that it is being done only in your loved one’s best interest. Now, with regard to YOUR adjustment — this is a big part of things, too, you know — keep up talks with your support system. This includes friends, other caregivers, a counselor, other caregivers, etc. You also can keep in close contact with staff members at your loved one’s new home. Maintaining a good working relationship and developing rapport with staff and those who will be closest to your loved one day in, day out can only help. Get to know them. This also will keep you indirectly in touch with your loved one. A good facility will know how to handle the transition period and the adjustments you and your loved one will be making. If you ever become uncomfortable with the situation, do go to the facility. The key is staying involved in your loved one’s care, but at a level that won’t cause you more stress. Once this initial adjustment period is over, it is not recommended that you visit every day. But if you do, try to keep your visits not too long. Spend “quality time” rather than just “quantity time” there. Develop a visiting schedule that works for you and does not add to your stress, which will down grade your health. In most care facilities, you are allowed to eat with your loved one if you come at meal times. Just give advance notice to the kitchen. Also, some providers offer separate rooms so families can get together and meet away from others. This is especially true for birthdays or other special occasions. Just ask. Each resident has an individualized care plan, developed by multiple staff members representing different departments. You and your loved one are always invited to attend these meetings. This is a great opportunity to be involved with a loved one’s care. At these meetings, you will discuss diagnosis, goals, interventions, strengths, weaknesses and more. Some people are surprised to find out they can make care suggestions and express concerns at these meetings, which are held in a “neutral” environment. Depending on the level of care, these meetings take place every 30 to 90 days. You also might want to be involved with family council meetings, which many facilities hold. These are usually held on a monthly basis. Family members and staff come together to discuss upcoming events, facility changes and other issues. You also can be effectively involved even if you can’t physically attend the facility. Just ask other families’ members and caregivers about opportunities. If you want to spend more time at the facility, that is a choice you may make. Some family members are fond of “hanging out” at the nursing facility and make friends with other residents, families and caregivers.

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.

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.”

It is very likely he or she will be just like anyone else: The person will have good days and bad days, clearer days and foggier days. Sometimes it will seem like nothing is wrong; others, there will be no doubt Alzheimer’s is at work. On a good day, the person might remember things like he or she once did. Patients might appear upbeat and say they are feeling good. You should savor these times. Such lucidity is a blessing you should embrace. You might begin to question whether the Alzheimer’s diagnosis is accurate. This would be false hope. Realize these times should be savored, for they will pass. Caregivers tend to go through a grieving process and that can lead to fantasizing. It might seem like everything is just a bad dream, or that things will go back to the way they were one day. Denial might set in. We look forward to our loved ones “snapping out of it” any day. If and when lucid days come around, they can validate such fantasies. But then reality will hit us squarely between the eyes. While you must let yourself grieve, you also must remember to enjoy each moment of the good times. It might be a few good days, or even just a few moments. Enjoy them regardless! “Quality” is more important than “quantity.” This is what you have to remind yourself. If your quality time is limited, at least you have those moments to draw from. Look at them as a blessing — and look back to them to help you get through bad times. For more information, please click here to download our FREE “Indispensable Alzheimer’s Kit.”

As devastating as Alzheimer’s is, you can look at it as a burden or a blessing. We cannot control so much of our life — like what people think of us or how they run their lives. Or whether we get a disease. But what we CAN control is our own reactions. While it might be very difficult, as a caregiver you must arrive at a place of acceptance. But you do not get there without grieving first. Grieving is undeniably a personal journey. Some people progress at a fast pace while others take longer periods at various stages. Some stages they might never experience. Grieving can consist of many emotions: Shock — You can’t think, speak or react after hearing the diagnosis Emotional outpouring — Yell, cry, even throw things at this stage Depression — Loneliness and a feeling of isolation set in Physical signs of distress — You might feel ill or extremely tired Anxiety — Worries about what’s going to happen in the future grip you Anger, hostility — You’re mad at the afflicted person, your family, doctors, even God. You then can feel guilty, especially for the anger you have directed at God Guilt — Your thoughts and feelings make you feel guilty, or you feel that you’re not doing enough as a caregiver Not keeping up with normal activities — You worry about how others will react or treat your loved one Healing of memories — You come to the slow realization that healing memories are often painful memories. This is the time to come to grips with what is happening and realize that life has to change if it’s going to continue. Feed off the good memories to keep you going. Acceptance — You start to accept you are in a new chapter of life. If you can accept that, you can get on with your life, and with much less stress. Realize that you will continue to grieve due to the ongoing changes with Alzheimer’s disease. Even when you might get to the “acceptance” stage, you won’t be at the end of the line — you might cycle through the stages again, or through just a few. This is normal. It will not mean you’re regressing or going backwards. Afford yourself a break. Let yourself feel. The blessings start to become apparent once you hit the “acceptance” stage. It’s said Alzheimer’s disease can be a person’s second chance in life. Inhibitions disappear. Patients become blatantly truthful, and often funny in the process. You did not ask for your loved one to have dementia, and you didn’t ask to care for her or him. This situation has been “given” to you. That means it is a gift to you. And you discover that your loved one also is a gift to you. For more information, please click here to download our FREE “Indispensable Alzheimer’s Kit.”

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.”

If you step back and take a good look, there are many options for you. Just about anything you do together can be viewed as an “activity.” It often doesn’t take too much to make a person with Alzheimer’s feel useful. You can do something as helpful as go grocery shopping. Have him push the cart, or hand him things to arrange in the cart. He also can help unload them for the cashier and then later load them into the car. Having him hold a bag while you’re unlocking the car or your front door also can build self-esteem. Here is a list of activities you might like to try at home. Mix and modify as you find useful. You will have to consider cognitive ability and functioning levels, of course, so you don’t attempt something that will prove too hard or frustrating. Some of these things can be done with a partner, or alone. As time wears on, he will need a partner more often. With Alzheimer’s patients, it is always important to have a routine or schedule to rely on. Just don’t adhere to it too strictly if you see your husband’s mood or disposition is not suited for what you think you should be doing. • Play music — Music can enhance memory. Play upbeat music you can dance to, if that is a desirable option. It’s good exercise. Calming music will help everyone relax. • Write his life story with his assistance — Help him remember his life as you both organize photos and story lines. Include special events, family, awards, special events, accomplishments and more. Put everything in a durable book that your husband can carry around and look at often. • Video break — There are numerous videos/discs designed specifically for people with Alzheimer’s in mind. For example, Innovative Caregiving Resources (http://www.videorespite.com/) has 10 interactive DVDs/videotapes that will typically keep the attention of a person with Alzheimer’s for their full duration (20 to 53 minutes). Visit the company online, by phone [(801) 272-9446] or by mail: P.O. Box 17332, Salt lake City, UT  84117. • Exercise — Join a gym (to help both of you), go on walks, use an exercise video or audio program, putt on a portable putting green, bat an inflated balloon back and forth, play suitable games such as horseshoes (soft ones are lighter), bean bags or croquet. Your imagination is the only limit here. • Play cards or board games such as checkers • Relaxation — Have a relaxation period each day after lunch. Burn candles or incense (remember which scents get the best reactions), play calming music, gently massage warm lotion onto hands or arms. Consider this type of ritual around bedtime, too. • Read enjoyable things — This could be something funny, inspirational, spiritual or just reflective. One person can read to the other, or you can read together. For more information, an excellent resource is “The Indispensable Alzheimer’s Resource Kit.” It can be downloaded at no cost by clicking here.  

First, realize that grief is natural and should be allowed to happen. You are not alone in this, and yet you ARE unique. To that end, if you know someone else in a similar situation, try not to compare yourself to him or her. They might handle the process differently. Some grieve quietly, some quickly, some prolonged. The goal is for all to reach a stage of acceptance. How can you alleviate your pain? Try writing in a journal. Grieving actually is an array of emotions — anger, depression, shock, resentment, fear, loneliness, anxiety — that need to be expressed. If you can journal your thoughts, it can create an “escape” to a “safe” place, which is easier than going to a support group or a counselor, or even talking with a friend. Writing in a journal is an immediate and healthy way of coping. You should still consider attending a support group. It can be very helpful. Go with an open mind — don’t become overwhelmed when you hear others describe their situations. Everybody will have his or her own similar, yet unique, situation. Remember, too, that you’re not only there to get help — you’ll also be helping others. We forget that doing something for others makes us feel good about ourselves, which enhances our personal health in several ways. If there is someone you can confide in, such as a close friend(s), talk with her or him as often as the two of you can. Instead of feeling that we’re a burden to others, we should realize “that’s what friends are for” was coined for a good reason. Our friends want to help us, but usually we have to make a first step somehow. Or at least a welcoming one. Don’t worry about having too many people to confide in, or feeling obligated to confide in more people than you might want. Usually, just a few will become the ones you rely on. You also should consider talking with a member of the clergy whom you know and trust. Many are trained for just these kinds of talks. In many church communities, there are also others with whom you could speak. Depending on your needs, do not think twice if you believe you might benefit from a professional counselor who is trained in grief consultations. Some of them lead grief support groups — something you might want to consider (as opposed to just a general caregiving group). Family members, of course, can fill many of these roles. Some families are always close when it comes to personal matters. But keep in mind that even those families that don’t consider themselves “tight,” often have members who answer the bell and are nonetheless there for one other when the going gets tough. If you have family members who are either unable or unwilling to “be there” for you, however, you definitely should turn to one or more of the sources mentioned above.  For more information, an excellent resource is “The Indispensable Alzheimer’s Resource Kit.” It can be downloaded at no cost by clicking here.

The short answer is both the disease’s progression and medication can be responsible for confusion and/or unsteadiness in Alzheimer’s patients. Since Alzheimer’s is a neurological disorder, it causes confusion; it also can affect a person’s ability to move around, or ambulate. Alzheimer’s effects on the brain can cause a person to have difficulty with perception, which in turn can affect how a person walks. Black strips in carpeting may appear to be an opening in the floor or something else that needs to be stepped over. A shiny floor might give the impression it’s wet. Perceptions like these understandably can cause unsteadiness. Unfortunately, medicines’ side effects also can cause unsteadiness or confusion. That’s why family members and close friends are so important. As firsthand observers of a person’s behavior, they can notice changes easier than others. It is particularly important to watch for side effects right after a new medication or dosage has been introduced. Any sudden change in behavior most likely will be due to medication because Alzheimer’s typically does not progress quickly enough to create such changes. Ask your pharmacist or visit the website of a specific medication (e.g. www.namenda.com) to learn about possible side effects. These websites have a lot of useful information. Keep in mind that there also could be physical difficulties that arise that have nothing to do with the Alzheimer’s or any medication. Difficulty walking or any sudden confusion could be caused by an infection or another source of pain. Careful observation followed by some “detective” work will help discern what’s going on. It’s not uncommon for this to become second nature. You might not even realize you’re taking these steps after a while. Always remember, though, that if you have investigated and tried various options and nothing seems to work, symptoms such as confusion or unsteadiness could just be part of the disease’s natural, unrelenting progress. To help cope with caring for someone with Alzheimer’s, you might want to obtain a copy of this free resource, The Indispensable Alzheimer’s Resource Kit.