In this Alzheimer's parallel universe, there are two concerns: the care of the patient, and the care of the caregiver. Sometimes, what is good for one is difficult for the other but, when a solution is found to the problem of the patient, life usually also gets better for the caregiver. As I said in an earlier post, I don't presume to give advice. But let me share with you, some approaches that have worked for me.
It has taken me six years to get to this place. It is not a perfect place. When one's partner has Alzheimer's (AD), there is no perfect place. But it is an improvement over where we started. Like most caregivers, I began by playing catch up. All I knew about Alzheimer's was the horrible stereotype of the patient. My husband was bewildered by the loss of some of his ability. I was in shock. It took many months for me to absorb the diagnosis, to come to terms with my new responsibilities and role. I waited too long -- two years -- to get or accept help, only to find myself exhausted, emotionally and physically.
Then, there was a kind of Eureka moment. I realized that I was allowing myself, as well as my husband, to be at the mercy of Alzheimer's. Instead of just reacting, I needed to regain some control. My first source of help was the online support groups.
That exposure encouraged me to learn as much as I could about the disease, to try to understand what is happening to my husband. There are many excellent books but my bible in this has been The 36-Hour Day: A Family Guide to Caring for People with Alzheimer's, Related Dementias, and Memory Loss (A John Hopkins Press Health Book by Nancy L. Mace and Peter V. Rabins). Knowledge and understanding made it possible for me to step back, to view my role as manager of my husband's wellbeing -- in charge, instead of someone drafted into caring for him. It's a subtle distinction, but it has helped me become a more effective, less stressed caregiver.
The medical profession divides Alzheimer's into three categories; the Alzheimer's Association breaks this down into seven stages. This kind of profiling is helpful in charting the progress of a patient, as well as informing families and caregivers about what might lie ahead.But it is important to realize that this is not an assembly line: all patients do not progress at the same speed through these stages. In my husband's case, he has often straddled several Association stages at the same time, and there has been considerable yo-yoing. In March, his condition had deteriorated to the point where hospice was arranged: three weeks later he rallied and hospice was no longer appropriate.
If I can communicate anything through these blogs it would be my belief that the Alzheimer patient remains an individual. I firmly believe that the person you knew before AD is still in there. There are those who speak of personality changes. I wonder if that is a correct description. Is the person really changing, or is he or she understandably reacting to, and against, the toll of the disease. Others will talk about anger, as though it is an aberration. It seems to me that Alzheimer patients have quite a lot to be angry about. Bit by bit, their control over themselves and their world is disappearing. The man who ran a major corporation can no longer button his own shirt. The woman whose greatest joy was to cook for her family can no longer follow a recipe.
When someone is in physical pain, we are not surprised if they howl. When my husband says to me, "Am I doing something wrong? Should I be doing something? Am I off my rocker?", he is expressing his anguish. If you stop to think about the level of frustration, confusion, agitation that an AD patient is experiencing, lashing out is understandable. It is not personal: They are telling us of their pain. They are fighting back at their disease.
How should we react? It is tempting to take it personally, to be hurt, to even get angry ourselves. But that accomplishes nothing. The caregiver won't feel better for expressing irritation -- guilt is the inevitable by-product of loss of control. We know that, in the end, this is a battle that Alzheimer's will win. But the disease doesn't have to win every round. I try to think of myself and my husband as partners in the fight. If I can calm his anger with a hug or a smile or a word of understanding, we have won at least one round.
What works for us in terms of care, might not work for all. But all of us, AD patients or not, are susceptible to tone of voice and facial expression. I could say to you, "Let's go" and whether you take it as an exciting invitation, a command, or a scolding, will depend on how I say it. The tone of voice means more than the actual words. Not the bark of a sergeant major, and not baby talk because the patient is not an infant. None of that, "Have we had our bowel movement today?" Please!
Combine tone of voice with a smile, or a scowl -- and one's reaction will likely mirror the presentation. So, before I approach my husband about something that I want him to do -- be it take a shower, come to the table for lunch, get ready to go to the doctor -- I deliberately go into manager mode. I take a deep breath, get the tension out of my shoulders, think about my tone of voice, lighten up my face and slow down.
In my next blogs, more about dealing with anger, and how I have learned to slow down. As we go along, I hope readers will agree, disagree, share their opinions, that we will learn from each other.