This is a very tough situation; both for your mother and for your family. A family meeting with the oncologist concerning the cancer would help to ensure that all of you are on the same page. In a meeting like this, the doctor can answer any specific questions you have regarding the cancer, prognosis, and treatment options. It is more than likely that the doctor will recommend that you not be too aggressive or invasive with treatment; any type of operation or aggressive treatment will cause increased confusion for your mother. If surgery becomes a necessity, be sure you understand the risks involved.

Your doctor can also order hospice services. Hospice not only assists families dealing with a loved one with cancer, but also patients in the late stages of dementia or Alzheimer’s disease. Hospice is a wonderful organization that provides support, education, and care for loved ones and families of loved ones going through these difficult diseases. The goal of hospice is to keep your loved one out of the hospital and in her own home; to keep her comfortable and pain free, and to have the best quality of life possible.

This topic has been debated quite a bit, and the general consensus is that it really depends on the person. You know your loved one better than anyone; if you think he or she can handle it, then the answer is probably yes. You have to think about how it will affect them and whether telling them is of any benefit. It may also be useful to consider how he or she has handled stressful situations in the past.

If the person who has died is someone your loved one saw every day and will be missed, it may be beneficial to inform your loved one. The difficult part of this is that due to the short term memory loss, your loved one will more than likely forget and keep asking you about the person. At that time you will have to decide again whether to keep retelling the new or to use “therapeutic fibs.” Therapeutic fibs are ways to protect the person with dementia by responding to their questions without upsetting them unnecessarily. You can try telling your loved one about the deceased person and see how it goes, but if he or she continues to ask, you can say that the person isn’t here right now. You can say he or she isn’t here, and you’re not sure where they are, but you know that they are okay and in a safe place.

Whether or not to tell them about a death also depends on the stage of your loved one’s disease. In the early to middle stages of dementia, you may feel obligated to tell your loved one about a death, whereas in the later stages, telling probably wouldn’t be beneficial. No matter what the stage, if the deceased person was not around your loved one on a regular basis, telling your loved one may not be beneficial.

The same issue arises if your loved one asks about their parents. Often, your loved one’s parents have been gone for many years, but because the person is drawing on long-term memory, he or she is thinking about them again. The best way to handle this is through validation; you can say, “I know your parents aren’t here now and you miss them, but they are okay and they know where you are.” Then the two of you can reminisce.

Actually, the answer is yes—but not necessarily in the way you might think. Many times, a positive change in personality comes out due to a personality disorder which was present before the onset of Alzheimer’s, such as alcoholism, bipolar disorder, or schizophrenia. Some families of individuals affected by these disorders consider their loved ones to have been “blessed” with dementia or Alzheimer’s disease. Prior to the disease, their loved one was harsh or abusive. Now, the dementia has made him or her docile, loving, and happy.

These families often joke about having a support group for people who are happy about dementia. One was a man who had been married to his wife for almost 50 years. She had been an alcoholic for most of that time, even while raising their six children. As her disease progressed, she forgot to drink and became more and more loving and docile. It was as if the dementia brought out the best in her that many of those around her had seldom seen in previous years. Her children would visit, and she would act lovingly toward them. She had a good sense of humor and laughed a lot. Her husband stated many times that these were some of the best years of their married lives; he was almost grateful for her dementia. He felt as though this disease had given them both a second chance at a happy life together. She remained in their home with him as her primary caregiver until her death.

It just goes to show that sometimes, blessings come forth from tragedy.

The short answer is, these symptoms could be caused by either the disease itself or by the medication your loved one takes.

Alzheimer’s disease is a neurological disorder that causes confusion and can affect ambulation; due to the effects on the brain, a person with Alzheimer’s can experience difficulty with perception which can affect the way a person walks; a shiny floor may appear wet, a black carpet strip may appear to be a threshold to be stepped over. These misperceptions can cause unsteadiness.

The difficulty here is that medication can also cause confusion and unsteadiness. As a caretaker, it is important for you to continually observe your loved one’s behavior. If he has changed a medication or changed the dosage of a current medication, you need to watch for side effects. A sudden increase in confusion is likely due to the change in medication, because Alzheimer’s does not typically progress that rapidly. To read about the side effects of medications, ask your pharmacist or visit the website of the specific medication; e.g., www.namenda.com. These websites will contain a lot of information.

Another possibility to be aware of is the physical difficulties that are unrelated to the Alzheimer’s or to any of your loved one’s medications. Sudden confusion or difficulty walking can be signs of pain or infection. This requires taking the time to observe behaviors and then do the detective work to figure out what the cause may be. Eventually you will begin to do this without needing to consciously think about it. But remember, when you have tried everything and nothing seems to be working, the symptoms might simply be a part of the disease’s progress and are out of your control.

Oftentimes, the hardest thing to come to terms with in caring for loved ones with dementia or Alzheimer’s is learning to choose your battles, but this lesson can be the most helpful one in learning to deal with your loved one in a constructive way. Remember that just because a behavior is bothersome to us does not mean that it is an issue for the person with dementia. If you are feeling stressed about a behavior, just ask yourself, “Is my loved one in danger? Is this action detrimental to his or her health? Am I making a mountain out of a molehill?” For example, your loved one might be putting on multiple layers of clothing, this isn’t how they dressed before dementia, so it is different, but you need to ask yourself, “is that really hurting anyone?” If the answer is no…let it go. If you confront your loved one and make them change their clothes, it could result in agitation or even an angry outburst over a behavior that may not have actually needed intervention. It is your goal to prevent any stimuli that could bring out agitation.

As adults, we don’t like to be told what to do, and a person with dementia is no different. As a result, if you can “go with the flow” and only address the issues that are actually serious enough to address, everyone’s lives will be much less stressful.

Always remember that as human beings, people with dementia need to feel loved, needed, useful, and an important part of their environment. We must provide this for them by showing them love, making sure that are included whenever possible, allowing them to help, and setting them up for success.

One of the best ways to ensure positive interaction between yourself and your loved one is to employ “behavior acceptance.” If you look at a behavior as a part of the disease process and find a reason behind it, you can respond to it more effectively. For example, instead of saying “Your clothes are dirty. Would you please go change into something clean?” you could say, “Let’s go change our clothes so we can go to the store.” This is still a directive statement, but it’s less demanding, and since you are including yourself, the direction becomes less threatening.

You can live by this: “We cannot control what comes our way, but we can control how we respond.” The person with dementia is not able to change, so we must adapt to them. We can change our focus to “How can I best respond to this situation or behavior?” as opposed to looking at the person with dementia as “the problem.”

“Love cures people. Both the ones who give it, and the ones who receive it.”
—Karl Menninger

Environment plays a huge role in human behavior, and the optimal environment for a loved one with Alzheimer’s or dementia will be one in which they can feel safe, decreasing feelings of fear and insecurity. With that goal in mind, it is important to know what environmental factors can trigger increased confusion and agitation, and to prevent those feelings, you should continually assess the overall environment. Factors to keep in mind in this assessment are:

o Temperature; is it too hot or too cold?
o Lighting; is it too bright or too dim?
o Walkways/hallways: make sure these pathways are not too cluttered
o Noise: too loud?
o People: is your loved one comfortable with those who are present?

While these factors are generally important, they do not fit every patient. To tailor your loved one’s environment to them, look for patterns associated with any agitation they experience. These could include time of day, activities or events like children visiting, or even bathing. Once you have noticed the pattern, address that specific issue. Maybe visits should only occur in the morning when your loved one is well rested and in high spirits. Perhaps taking showers in the morning instead of before bed is upsetting to your loved one’s internal programming. Though these issues and routines can seem insignificant to us, they can make a huge difference to your loved one.

In addition to minimizing the agitating aspects of your loved one’s environment, there are additions you can make to their environment that will create a more soothing atmosphere. An environment that your loved one finds relaxing can be key in helping to calm agitation, and whatever that means for your loved one is what is best.
Common calming effects include:

o Burning fragrant candles or incense, or using an electric infuser
o Playing a favorite kind of music or video
o Sitting in front of the fireplace
o White noise, such as a fan
o Getting fresh air from outside
o Watching birds from the porch
o Anything else that your loved one finds calming