Caregiving Questions

Just remember that with Alzheimer's disease, most patients will have "good" days and "bad" days. Unfortunately, the good days tend to become less common as the disease progresses. Sometimes caregivers will notice that their loved one's condition suddenly worsens and will mistakenly attribute the symptoms to medications (or lack of medications). Your mother's behavior—removing clothes, arguing, aggressive, or persistent behaviors—are not uncommon among Alzheimer's patients even though they are disturbing. And Alzheimer's patients also often have their day-night sleep cycles confused, so that they seem tired and lethargic during the day and wide awake at night.

Because of legal and ethical issues, it is unlikely that the staff of the nursing home is medicating your mother without your knowledge. However, if your mother has a physician outside of the nursing home, it wouldn't hurt to speak to him or her about your mother's latest symptoms and your concerns. Her behaviors may just be a part of Alzheimer's, or the doctor may determine that they are indicative of another health-related condition. There is also the chance that your mother's doctor might determine that certain medications may actually be beneficial to your mother, such as to reduce aggressive behaviors.

Alzheimer's disease can certainly affect the ability to speak in a patient. Speech problems typically arise in Stage 2 of the disease, wherein patients may forget words for things or speak nonsensically. Complete loss of speech can also occur depending on what part of the brain is affected by the disease.

Your wife appears to still be able to comprehend what you are asking, which is good. While your wife is still able to understand, you may want to consider developing other non-verbal ways of communicating with her, such as by touch, visual aids or gestures, or other sounds. By all means you should still continue to speak to her in clear and calm language. However, you may find it very useful, particularly in the future when your wife could lose even the ability to answer yes or no, to establish some other means of communication now.

Unfortunately, there are no drugs or therapies currently available that are able to completely prevent the onset of Alzheimer's disease. There are some treatments in various stages of clinical trials that are proposed to delay the onset of the disease, but none are publically available yet. For example, there is hope that an Alzheimer's vaccine approach, which is still under investigation, may help to slow the progress of Alzheimer's disease as well as to delay disease onset.

Until such therapies are perfected, the best way to reduce your risk of developing Alzheimer's disease is to try to maintain a healthy lifestyle by regularly exercising your mind and body and to try to eat a healthy diet. You should strive for diet that is low in saturated and trans fats and high in antioxidants. You can mentally exercise your brain by doing puzzles, word games, learning a new language or technology—anything really that challenges your mind and really makes you think. Additionally, try to reduce your stress levels in general and strive to get the recommended 7-8 hours of sleep each night.

Of course it's not right to lie to an Alzheimer's patient (or anyone else for that matter), but sometimes it is easier to go along with their illusions than to try to constantly correct them. As you have mentioned, sometimes this just leads to them becoming upset and depressed. You know your father best, and if you believe that telling a white lie or omitting the truth may help in certain circumstances, then it should be okay so long as it causes no harm to anyone. That being said, however, you still have a moral obligation to inform him of important matters, such as his health, even if the truth is not so kind.

Beyond all this, your father's confusion and repetitive requests may stem from some anxiety or fear he may have. Has something changed in his life recently that would cause him to become fretful or anxious? Sometimes you can forestall the repeated requests by addressing the emotional subtext behind them. Your father may be missing someone from his past or else he may feel that he has become a burden to you. Reassure your father that he will always have a home with you and that you will take good care of him.

It is not uncommon for an Alzheimer's patient to repeatedly ask the same question or repeat the same phrase over and over. The repetition is a function of the disease; she is not purposely trying to annoy you. Alzheimer's impairs a patient's short-term memory, so a patient effectively forgets that the same question has already been asked and answered. Just remember that your grandmother's forgetfulness is just as confusing and frustrating to her as it is to you.

In most cases, however, repetitive questions usually stem from a particular fear or anxiety. For example, if the patient repeatedly asks you when a doctor's appointment is scheduled, it may be because she is anxious about going to see the doctor. So when you talk to her, try to address the underlying emotion in the question ("I'll be right there with you the whole time at the doctor's office.") If she talks about someone from the past ("Where's my husband?"), it may be because she feels insecure or lonely, that no one from her past will be there to take care of her now. In this case, a well-guided question ("I understand how much you must miss Joe. We all miss him. Why don't you tell me about how he proposed to you?"), for example, should get her to stop and change gears instead of repeatedly asking about the person, place or event. Because of the nature of Alzheimer's, the patient will require continual calm reassurance that everything is fine, that you love her, and that you will continue to care for her.

Anything you can do to help reduce the patient's anxiety and uncertainty may also help to reduce the repetitive questioning. For example, you can use notes, signs, or even a written daily schedule on a wall chart to help remind her when it is time for meals, bathing, activities, bedtime, and so on. And if you are trying to get her to do something and she becomes agitated, be patient and explain what you want her to do with simple, straightforward instructions.

Water intake varies greatly among individuals and is dependent on a number of factors such as a person's weight, activity level, climate (hot or cold, humid or dry, etc.), altitude, and overall health status. Most average healthy adults are roughly advised to drink approximately 8 to 10 glasses of water of about 8 ounces (1 cup) each, or about 64 fluid ounces total (or about 2 liters). This guideline will most likely be different for an Alzheimer's patient who is immobile or bedridden, or if the patient has kidney, liver, thyroid or heart problems. In case of the latter, it is always best to check with the patient's physician to determine specific fluid intake guidelines. In general, the best gauge is to monitor the patient's urine output—adequate water intake should result in a normal amount of colorless or slightly yellow urine.

Even if your husband does not remember much about the cruise afterward, it will not be a waste of money. The time you spend together getting some much needed rest and relaxation will be worth every penny. Take lots of pictures and create memories for the both of you. You can show the pictures to your husband after you get back and remind him of the good time you had together. Your husband may not be interested in going because he may be anxious about traveling or else he may feel he is a burden to you. Keep a positive attitude and calmly reassure your husband that he’ll be safe while traveling and that you want nothing more than to spend some valued time with him.

Although traveling with an Alzheimer's patient can be challenging, but you can greatly reduce stress for both you and your husband if you are well-prepared for you trip. The following are some suggestions that may help:

• Well in advance, make the cruise ship coordinator aware of any special requirements your husband may have.
  
• Try to keep to your regular schedule as much as possible while traveling —try to keep mealtimes, naps, and bedtime the same.
  
• If you must fly to get to the cruise ship, try to avoid flights with stopovers —even if a direct flight costs more, it is well worth it to avoid aggravation and stress.
  
• Try to avoid traveling on peak travel days or times of day. Plan your traveling times earlier in the day when your husband may be at his best. Make sure you are both wearing comfortable clothes and are well-fed and rested for your journey.
  
• Carry all identification, documents and tickets yourself —don’t let your husband be responsible for holding important items. You may also want to bring copies of important health records or prescriptions in case you need to see a doctor while you are away from home.
  
• Bring along snacks, puzzles, and books, for distracting your husband while en route to the cruise ship and any favorite or familiar items (pillow, alarm clock, security blanket) that will help him feel more comfortable and secure once in his new room.
  
• When you arrive on the ship, go to your room first and allow your husband to adjust to his new environment before setting out to explore the ship. If your husband is very anxious about his new surroundings when you first arrive, you may want to arrange to have a meal or two in your cabin until he feels more comfortable about being there.
  
• Be sure to secure all door locks at night before bed in case your husband wanders. Sometimes anxiety brought on by a change in routine or environment can trigger wandering behavior in Alzheimer's patients.
  
• Check with his doctor to see if any medications, such as sedatives, motion sickness medications or anti-anxiety medications, would be recommended for the trip. You may not ever use the drugs, but they might be helpful to have on hand.
  
• Try not to feel like you must do everything that the cruise has to offer. Gauge how your husband is adjusting and do not plan more than one or two social activities or outings per day. Quiet time is very important too. Do not feel that your MUST be social with everyone you meet on the cruise. You are there to enjoy some special time with your husband, and you must act in your husband’s best interest —don’t worry about insulting the people at your dinner table if you must get up and leave a meal early.

Just as Alzheimer's patients may become incontinent when they become unaware of the need to relieve themselves, it is also possible for them to become confused about the processing of pain signals. They may be unaware that they have injured themselves, or they may feel discomfort or pain but cannot communicate these feelings. This inability to verbalize their discomfort can lead to anxious or aggressive behavior. Aggressive or argumentative behavior (verbal or physical) is one of the more disturbing and difficult behaviors in Alzheimer's disease. Just remember that it is not advisable to argue or fight with an Alzheimer's patient because he could cause injury to you or himself. When your father becomes angry or argumentative, try redirecting his attention to a new subject or activity.

Just based upon your description, your father sounds like he may be in late stage two or even early in stage three. On average, patients with Alzheimer's disease live for 8 to 10 years following diagnosis. However, this is only a rough average, as some patients with Alzheimer's disease have been known to survive for as long as 20 years. Your father's doctor can provide you with more detailed information concerning your questions.