Asking For Help

If you are a family caregiver, you know that much of your energy is focused on meeting the needs of the person you are caring for, and that focusing on your own needs may seem selfish. But preserving your health, getting a break, having time for yourself, none of these are selfish desires. They are part of what we all need to do, caregivers and non-caregivers alike. It's important that caregivers don't try to do everything themselves. Asking for help may be difficult or even seem embarrassing, but you may discover that friends and family are not only willing, but even eager to help. And remember, asking for help means less stress for you, which almost always means you'll be a better family caregiver.

Here are a few suggestions:

• Sit down with family members or friends in person or find a quiet time to talk to them on the phone.
• Discuss specific areas in which you think they could help.
• Clearly explain what they could do to help.

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Stretched

Nearly 60% of working caregivers have had to make some sort of adjustment to their work schedule--coming in late or leaving early; dropping back to part-time; passing up promotions. Seventeen percent even take unpaid leaves of absence. Nine percent either take early retirement or leave the workforce entirely.

Some employers have programs to help caregiving employees. Even some small or mid-sized employers offer flex-time or compressed work weeks. Or they may offer brown-bag "lunch and learn" seminars on topics like Alzheimer's or how to deal with caregiving over the holidays. Larger employers may offer enhanced resource and referral programs or even geriatric care manager services to help employees with complex home situations.

At a minimum, the person responsible for Human Resources at your Employer should be able to describe what existing employee benefits may help you to balance your job and your caregiving responsibilities.

 

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Dementia Signage for the Home

 

  

 

 

  

 

  

The Behavior Detective

As a caregiver for a loved one with Alzheimer's disease, it can be extremely worrying to experience the behavior problems associated with mid-stage Alzheimer’s disease, such as wandering, aggressiveness, hallucinations, or sleeping and eating difficulties. Many behavior problems are made worse by a poor environment and an inability to deal with stress. By learning how to make changes in the caring atmosphere, you can increase the quality of life for both your loved one and yourself.

 

Problem behavior is often a way a person  with Alzheimer’s tries to communicate with you. The progression of the disease means that they may no longer be able to communicate verbally, but they are still emotionally conscious and will remain so, often until the very end of life.

In many cases your loved one’s behavior is a reaction to an uncomfortable or stressful environment. If you can establish why he or she is stressed or what is triggering their discomfort, you should be able to resolve the problem behavior with greater ease. Remember that your loved one is not being deliberately difficult. Their sense of reality may be different to yours, but it’s still very real to them.

Here are a few suggestions to help you identify the causes of problem behavior:

• Try to put yourself in your loved one's situation. Look at their body language and imagine how they might be feeling and what they might be trying to express.
• Ask yourself what happened just before the problem behavior started? Did something trigger the behavior?
• Are your loved one’s needs being met?
• Does changing the environment or the atmosphere help to comfort him or her?
• How did you react to the problem behavior? Did your reaction help to soothe your loved one or did it make the behavior worse?

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Behavior Management Tools

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Reading Alzheimer's

Sadness, joy, appreciation, fear — emotions of many colors still register with your loved one. The difference: It’s difficult now to express them. Just knowing that your loved one still experiences emotions despite Alzheimer's can help make your time together more meaningful and help you improve his or her quality of life.

Watch closely, and you’ll learn the patterns that are unique to your loved one. For example:

• Are your loved one’s eyes open wide or shut? Are they tracking you or looking away? Tearing up?
• Are the teeth clenched, or is the mouth relaxed?
• What’s the nature of the sounds that are made during certain experiences? A distressed moan may come to sound different from a pleased one.

Many caregivers say they can see whole messages — “Thank you,” “I love you” — written on the face, even if no longer uttered aloud.

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The Denture Detective

My poor Mother... she has been looking for her teeth for 6 months. She is convinced a man switched his with hers and they need to switch back. Her teeth, of course, are in her denture cup at the moment. They are hers. Maybe her gums are shrinking and they don't fit as well. She just worries herself to death over them. I have been trying to get her in bed for 20 minutes now, but she keeps getting up to see where she put her teeth. They are hers at night when she takes them out and they are someone else's when she tries to eat.

She'll get up and put them in a drawer and 5 minutes later she is looking all over for them, in a panic. I have to stay one step ahead of her. Then she'll get back up and get them and tell me a story about someone who was here a while back and let their small children run amok in the bathroom and they took her teeth and were out playing with them in the yard! So I always say, "those darn kids. They won't be here tonight." 

It's amazing that she will remember to tell me that story about every other night but she can't remember all of her kids.

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Road Trip

Imagine helping a friend on a journey to a remote monastery perched on top of a mountain. As you begin your trip, the path is fairly clearly marked and the goal easily seen in the distance. But as you approach, the monastery is often obscured by the tops of trees in the forests through which you pass. And you say " if only we could get out of this woods, we would be able to see the monastery again and see where we're going." And as you continue the climb, the path fades and much is accomplished by guesswork. You call on your friend for help. After all, this is his trip and he should know what he's doing. But he becomes older and weaker and relies more on you moment by moment.

Things get worse. You lose the path and you are tired and hungry. But, he can not proceed alone and you can't leave him on the mountain while you return to the warmth and safety of home. So, you find a new reserve of strength, enough for both of you, and you continue up the mountain, for now it is your journey, as well. You look at yourself anew and find that you have gown older, become more mature like your friend, and you accept this as part of the mutual trip. And in accepting your role as guide you find that you are guided, that your friend, whose legs have crumpled beneath him by now, offers you wellsprings of courage and hope. You drink deeply, for you realize that if either of you are to make it to the top, it will need both of you guiding and supporting the other in ways constantly changing and unimaginable.

One day when you least expect it, the heavy cedar gates of the monastery are suddenly dead ahead. The trip had become the whole purpose, it seemed, and the monastery forgotten. But there it stands: Your friend's objective has been reached The door opens to admit your friend and, as if you had performed the ritual many times before, you hand your friend over the threshold. The door closes, and you stand there numb, alone, bewildered.

Out of habit you continue walking. It doesn't seem to matter in what direction, for each of the possible paths lead back down from the mountain.

The trip down seems easier than the trip up was. The mountain holds few surprises, now, and there is ample time to sit and ponder before reaching the valley below. And somehow in reviewing the trip with your friend, its moments of desperation and fear are overshadowed by the times of giving and accepting, of sharing and journeying together. Memory of the monastery fades and in its place stand crystal images of points along the upward trek. There was the time you picked him up and carried him across the rocks when his strength failed. And there was the time when you slipped and lost your grasp, but he held you up and supported you with the power of his mind. There was something special in those moments, something, which if you could string all of those images together in just the right order, that then, maybe then, you would understand.

As it is, you return to the valley a different person, quieter and stronger, knowing only that you have been a part of something .... holy. This friend shared with you his most personal possession, his death. And though you can't quite comprehend its true value, you find yourself hoping that you will have the ability to fully experience and share your final journey with another wayfarer to whom you can pass on crystal images.

Deep gratitude and celebration are the order of the day for those of us who are called to assist in this challenge. The suffering, remember, is found only in our refusal to let go, only when we refuse to go through the pain and move to the other side. We get through by going through. The rewards are wonderful: the joy and blessings that come from extending the self beyond its own comfort zone; the knowledge we gain of life and death; the love that is lost and found again on a higher plane; and the areas of awareness that are opened. Grief is a healing process to be welcomed and not feared, for when it is allowed to go its own course unobstructed, it will fill with wonder the void that the loss created.

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Simon Says...!

If you are having trouble motivating your loved one with Alzheimer's disease to complete routine tasks like bathing or brushing his or her teeth, try making a game of it by playing Simon Says. As the disease progresses, your loved one will probably need step-by-step instructions, so why not make it fun. Here's some example for playing Simon Says to accomplish daily care activities:

Brushing Teeth:

Simon says pick up your tooth brush.
Simon says put some toothpaste on your tooth brush.
Simon says brush your upper teeth.
Simon says brush your bottom teeth.
Simon says brush your upper left teeth.
Simon says brush your lower right teeth.
Ans so on....

Bathing:

Simon says it's time to take your bath (or shower).
Simon says go into the Bathroom.
Simon says take your clothes off.
Simon says step into the Bath Tub (or shower).
Simon says pick up the sopap.
Simon says rub the soap over your left arm.
Simon says rub the soap on your left leg.
Simon says rub the soap on your cheast.
Simon says rub the soap over your right arm.
Simon says rub the soap on your right leg.
Simon says rinse the soap off your body.
And so on...

Washing Hair:

Simon says wet your hair under the shower (or sink, depending on how you normally prefer to do this task).
Simon says put some shampoo in your left (or right) hand.
Simon says rub the shampoo in your hair.
Simon says rinse your hair under the water.
Simon says pick up the towel and rub the water out of your hair.
And so on...

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Bathroom Signs & Toiletry Labels

Singin' in the Rain!

Motivating a loved one with Alzheimer's disease to take a shower or bath can seem impossible. Here are a few suggestions:

• Although it may be a bit inconvenient for you if you work full/part time, try asking your loved one to shower at a different time of day when he/she may have more energy and motivation.
• Try playing some of your loved one’s favorite music in the bathroom while he/ she is showering and encourage him/her to sing or hum. Maybe some good ol’ Big Band stuff will get him/her going! Or if he/she likes the classical stuff, this could make a relaxing night time bath.
• If he or she is able to, he/she may prefer a bath. You could take him/her shopping and let him/her pick out a bubble bath fragrance that he/she likes.

Bathroom Signs & Toiletry Labels

Managing Odd Behaviors

Changes in the brain that are associated with Alzheimer's disease can lead to unusual and unpredictable thinking and behavior. For example, your loved one may become anxious around family members, neighbors, or friends whom he or she may not recognize, or in situations that stray from the normal routine. Your loved one may also become suspicious and suffer from delusions (false ideas that a person firmly believes and strongly maintains in spite of contradictory evidence). He or she may also begin to withdraw from social interaction, wander, become aggressive, and/or become angry and irritable.

Here are a few suggestions to help minimize and manage these unusual behaviors:

• Try to preserve your loved one's abilities, especially those that affect dignity (such as eating and using the toilet) rather than try to teach new skills.
• Try to minimize any changes in the surroundings or to your loved one's daily routine.
• Follow simple routines and avoid situations that require your loved one to make decisions. Having to make choices can be very frustrating and cause anxiety for a person with Alzheimer's disease.

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Behavior Management Tools








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Health Management Aids

Telling Others About The Diagnosis

If your loved one has not been told his or her diagnosis, consider talking about it with him or her, even if you use words such as "memory problems" instead of "Alzheimer's disease." Talking about the diagnosis allows you to be involved in future plans. Here are a few more tips on how to talk about an Alzheimer's diagnosis:

• Consider sharing the diagnosis with others, even if you are reluctant at first. Doing so will help you to gain support from others. It also relieves both of you of having to pretend that everything is OK.
• Talk about how you will tell others. You may want to tell select friends and relatives one on one. Or you may want to write a letter, as President Reagan did when he received his diagnosis.
• Expect that some people may not believe the diagnosis at first. Alzheimer's disease is in many ways "invisible," particularly in its early stages. Often, those who have it appear healthy. The symptoms are not always apparent.
• Be prepared for the possibility that lack of understanding about the disease may cause some friends and family members not to know how to respond to your news.
• Let people know that calls, cards, letters, and visits are welcome. Tell people what the best times for visits would be.
• Be ready with a list of suggestions for those who ask how they can help.

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Reminder Notes & Memory Aids

Getting to the Bathroom On Time

At some point, your loved one may have incontinence issues. Of course, there are over the counter products you might want to consider using. Here are a few other suggestions:

• Watch for signs that your loved one needs to go to the bathroom, such as unusual pacing or fidgeting. Alzheimer's disease can affect your loved one's ability to remember where the bathroom is and how to get there.
• Ask your loved one if he or she needs to use the restroom several times during the day.
• Post a sign on the Bathroom Door that says "Bathroom."
• Consider getting a bedside commode to prevent night time accidents.

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Bathroom Signs & Toiletry Labels

   

Life Goes On...

People at the early stage of Alzheimer's disease may be able to continue in some of their most important roles. Relationships may change because of changing abilities. For example:

 

• Changes in communicating may make it difficult for your loved one to express his or her thoughts and feelings. This may cause your loved one to feel angry, frustrated, or lonely
• Sharing the diagnosis with others may cause your loved one  to worry that friends and family members will act differently with him or her
• Hiding the diagnosis or not telling it to others may cause your loved one to fear that his or her symptoms will be discovered. This can lead to social isolation and being depressed

You as the Caregiver will also experience changes in your usual role and relationship with your loved one. For example:

• Your loved one's changing abilities may require you to take over some unfamiliar tasks, such as paying bills, cooking meals, or driving
• Communication difficulties that cause your loved one to feel lonely can create the same feelings for you

Here are some suggestions to help you and your loved one move forward in your changing roles:

• Help your loved one determine whom he or she will tell about the diagnosis, and how he or she  will do so. 
• Consider getting support for your feelings. Talk with each other, or talk with friends, family, or professionals.
• Encourage your loved one to continue to do familiar things that help him or her feel connected to you and others, such as preparing meals, or visiting family.
• If appropriate, encourage your loved one  to address his or her needs on a spiritual level by attending religious services or reading special passages together

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Helpful  Products for the Home

Someone Stole My Purse!

Some people with dementia can become suspicious. If they have mislaid an object they may accuse someone of stealing it, or they may imagine that a friendly neighbour is plotting against them. These ideas may be due to failing memory, an inability to recognise people, and the need to make sense of what is happening around them.

Here are some things you can do to help:

• State calmly what you know to be true, if appropriate, and then reassure and distract your loved one.
• Try to remember that although your loved one's interpretation may be wrong, the way he or she  feels is real.
• Explain to others that they should not take your loved one's unfounded accusations seriously.
• Don't automatically dismiss your loved one's suspicions if there is any possibility that they may be true.

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Ballroom Dancing v. Caregiving

You are a mother or a father, a son or a daughter, an employee or a homemaker. These roles and relationships are such a part of us that we seldom give them much thought. We simply accept them – until Alzheimer's disease causes them to change. And with this condition, certain changes in roles and relationships are to be expected. A once-independent spouse or parent may have to accept help for the first time in his or her life. A child may have to support the parent who has always supported him or her. These adjustments can be difficult to make, especially at first. But you can make adjustments that benefit both of you if you keep your partnership in mind.

The changing relationship between the person with Alzheimer's disease and the caregiver is a lot like the relationship between two ballroom dancers. When a couple dances, one person is the leader and the other is the follower.

In your relationship now, the caregiver may have to do a little more leading and less following. And the person with Alzheimer's disease may need to find a way to follow that is comfortable.

Fortunately, Alzheimer's disease usually progresses slowly, and in most cases you can shift your roles little by little. Being flexible is required. That is usually true for successful relationships. So, if you can stay flexible, you are likely to find ways to be close to each other. And that is staying connected.

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