Have you ever visited the Alzheimer’s Association website (alz.org), and seen what is available to help families? On it, there are a lot of free tips and help, numerous free e-learning workshops and books, as well local workshops and training classes from family care to online certifications.
Among the many wonderful things you will find on this website are a message board where people having the same issues and concerns regarding Alzheimer’s can share their daily struggles, get advice from others and just to simply tell their story. Also, for the month of November there is a place where you can “Honor A Caregiver” by taking a moment to say “thank you” to all the exceptional people that are Alzheimer’s and dementia caregivers.
This story, written by author of “Before I Forget,” Dan Gasby, is one of the amazing stories you will find in the “Honor A Caregiver” link on the website.
“Two years ago, when my wife got her diagnosis, I made the same assumption that almost all newcomers to this challenging subject do. I thought it was all about the loved one who now had Alzheimer’s. She was the patient – or maybe the word I used more often was “victim”.
She was, and she is. But the challenge, I came to see, was just as formidable for me as it was for her. I don’t mean to sound cavalier here. Any of us, given a choice between having Alzheimer’s and caring for someone who does, would choose the caregiver role. I know that. I don’t ever minimize what my wife faces every day, and how that challenge grows.
But being a caregiver is hard. It is definitely the hardest thing I have ever done in my life. Growing up in Bed-Stuy at the time I did, breaking out of what was one of New York’s toughest inner-city neighborhoods, finding jobs as a very black man in a white man’s world – that was easy compared to taking care of a wife with Alzheimer’s, day by day, hour by hour. Here are a few helpful suggestions I’ve learned through experience.
- Read the literature. I know that sounds obvious, but the fact is that most caregivers read very little. For one thing, they’re occupied with caring for their loved one. I get it! But frankly, most feel they’ve done enough by just listening to what their doctor tells them. They really haven’t. There’s so much to learn in terms of diet, activity, ways of coping… I think you can get a lot of that from our book, but I’d urge you not to stop there. Knowledge helps. It helps your loved one, and it helps you, with specific suggestions on what to do and what not to do.
- Learn as much as you can about the disease. Maybe this seems like extra homework, but I got fascinated by learning the science of what Alzheimer’s is. I found it oddly comforting to know what doctors have figured out so far – more so to learn what the paths are to a possible cure.
- Get in touch with your local branch of the Alzheimer’s Association. There are many wonderful organizations out there, from those promoting research and drug trials to commonsense help for caregivers, and we list a number of them in our book. But the National Alzheimer’s Association is in a class by itself – a fount of information, with an unequaled network of local branches to offer all kinds of hands-on help.
- In groups of three or more, don’t treat your loved one as if she doesn’t exist, and don’t refer to her in the third person. The most loving and will-intentioned caregiver can find himself icing his loved one out of the conversation – with her sitting right beside him. It’s understandable, especially if the disease has progressed to the point where the patient has lost all ability to follow the conversational thread. But even severely impaired patients tend to sense when they’re being excluded (I’d put that more in the spiritual than scientific realm), and feel hurt and humiliated as a result.
- Don’t try to finish a loved one’s sentences. Give her time to respond. If she can’t retrieve her thought after a long pause, gently prompt her with what you think she’s trying to say. When this started with my wife, I made the classic mistake of letting my frustrations get the better of me. My wife would let a sentence trail off into space, and I’d jump in to finish it for her. As soon as I knew what she was trying to say, I’d go there first. I still get impatient – I’m only human – but I’ve gotten a lot better at letting my wife take the time she needs. I try to be Zen-like about it. I mean, after all, what’s the hurry?
- Avoid being condescending or critical, at all costs. It’s debilitating and simply doesn’t work. I tell you this from bitter experience. Before Alzheimer’s, my wife and I never argued. Frankly, that wasn’t because we were both so level headed. It was that my wife was! I was the one with a temper; my wife was just gracious enough to keep me calm.
When her Alzheimer’s came on, my wife was still calm, but I no longer was. I was mad, at fate, and yes, too often, mad at my wife. Slowly I got over that and came to terms with the obvious. Alzheimer’s wasn’t my wife’s fault, and my lashing out at her when she forgot something I told her tem minutes before, was of no help or justification whatsoever.
Here’s one thing that helped me: I started consciously keeping my conversation with my wife to questions that could be answered yes or no. Instead of ‘what would you like to wear today?‘ I’d say, ‘How about these black pants?’ In the supermarket, same thing; not, ‘What shall we have for dinner tonight?’ but rather, “How about this salmon with a little salad?” It made for a much happier wife. She could participate in the decision and not feel left out, or worse, hurt by a snappish remark from me.
- Above all, never lose sight of the dignity within the human being who has the disease. This is so critical. Maybe it’s the most critical point of all. Patients get worse with Alzheimer’s. So far, that’s the unavoidable truth, without exception. As they do, they lose physical mobility along with their functioning minds. This is a terrible process for them – and for those who love and care for them. But even those with severe Alzheimer’s retain their humanity and remain somewhere inside the people we knew. We have to honor that, always, even to the last, both for their sake and ours.