Let's face it. Caring for a person with Alzheimer's is hard work. You may have to deal with personality changes and difficult behaviors. You may be asked the same question over and over. You typically face issues with bathing, dressing and toileting. Your loved one may wander off if you aren't careful.
Eventually, you may have to grapple with the decision to place your loved one in a long-term care facility. And the list goes on and on. But the most painful thing you will ever face as an Alzheimer's caregiver is that you slowly lose the person you love.
If you read books, attend presentations and talk to experts about Alzheimer's caregiving, you'll get a seemingly unending string of advice. Some suggestions will be good; others won't be very sound. What I want to achieve in this article is to offer some ideas about five things Alzheimer's caregivers should never do.
Don't Be in Denial
When a loved one shows signs of dementia it's painful to acknowledge it. It's common for their friends and loved ones to be in denial. It's easy to ignore the symptoms, make excuses for the person, push the symptoms to the back of your mind and find other ways to avoid thinking even for a minute that the person may have dementia. I wrote more about this in an article entitled "Alzheimer's and the Devil Called Denial."
The problem with denial is it doesn't lead you to take your loved one to a primary care physician or neurologist for a complete workup. And the problem with that is that sometimes dementia is caused by health issues other than Alzheimer's. As I stated in another article, "What If It's Not Alzheimer's?" some of those problems can be treated or even reversed. And if it is Alzheimer's the earlier treatment is started, the better.
Don't Ask "Do You Remember?"
Asking a person with Alzheimer's if they remember something is a common mistake that's easy to make. It's almost as though we think we can jog their memory. But we rarely do. They have probably forgotten the event in question. That's what people with Alzheimer's do. They forget. So it's better to say, "I remember when..." and then tell them a story.
Don't Argue With or Contradict the Person
If you're caring for someone with dementia, it's so easy to contradict or argue with them when they say things that are total nonsense. And they typically say a lot of things that fall into this category. For instance, they may think they are a child again or they may tell you stories that couldn't possibly be true.
But the fact of the matter is that you can never win an argument with people who have dementia. They will stick to their guns to the bitter end! It's much better to agree with them and then change the subject. This can prevent a nasty argument that would spoil your time with your loved one. For more detailed advice on this issue see my article, "The Contentious Alzheimer's Patient - You Can Be Right or You Can Have Peace."
Don't Delay Nursing Home Placement When It's Clearly Needed
At some point in the disease process it may (but not always) become evident that you can no longer care for the person at home. Later in the development of the disease, it takes a village to care for Alzheimer's patients. They'll likely need a nursing staff and aids 24 hours a day and a physician on call at all times. They also need a dietician, a cook, a housekeeper, an activity director and many more professionals. Another important thing they need is to have people around them to provide social stimulation.
As I stated in another article, "Nursing Home Placement for Alzheimer's Patients -- It Can Be the Most Loving Choice," sometimes placing the person in a reputable institution is indeed the most loving choice for the patient -- not to mention for you. When you no longer have to care for the person 24 hours a day you can relax, get some much-needed rest and really enjoy spending time with your loved one, all the while being assured he or she is getting the best care possible.
Don't Stop Visiting When Your Loved One No Longer Recognize You
Many people think that there's no reason to visit a loved one who no longer recognizes them, but I am firmly convinced that you should visit anyway. First of all, the person may enjoy being visited even if he or she doesn't quite know who is visiting them. More importantly, it's possible that the person does recognize you but simply isn't able to say so.
We never know whom Alzheimer's patients do and do not recognize somewhere deep down. Although there's no way to know for sure, my conviction is that the person is really "in there" somewhere and we should always assume the person may know and feel more than he or she can express.
Do any of you have suggestions of other things an Alzheimer's caregiver should never do?
For more about Alzheimer's read my book, Come Back Early Today: A Memoir of Love, Alzheimer's and Joy, and visit my website, which has a wealth of information for Alzheimer's caregivers.