This Valentine’s Day, millions of spouses will be masking their pain as they struggle to celebrate a day dedicated to love. Their husband or wife who has dementia either doesn’t understand what the day is about or, worse yet, doesn't recognize them for who they are.
Dear Carol: My grandmother died suddenly leaving my grandfather, who has middle stage Alzheimer’s, more confused than ever. I’ve been arguing with my parents about how to handle his repeated questions about where my grandmother is. Both of my parents feel that they need to keep telling him that she died because that’s the truth. I know they mean well, but it seems as if his pain is fresh each time and I think I've read where you shouldn't tell people with dementia about a death. I’d hate to lie to my grandfather but I don’t know what to do. Is there some rule to go by? Amanda
While Alzheimer’s specific drugs may help slow symptoms for some people, they also may increase the risk of hip fractures, fainting, urinary problems and other health issues. Most researchers now think that a time comes when many medications for the elderly are no longer beneficial and may be harmful. According to an article in JAMA Internal Medicine, researchers at the University of Massachusetts Medical School in Worcester looked at 5,406 nursing home residents who had late-stage Alzheimer’s or dementia with more than half of them being older than 85. The scientists found that 2,911 of the patients – nearly 54 percent - were taking at least one medication of questionable benefit.
Has your spouse’s dementia made him forget that there is such a day as Valentine’s Day? Worse yet, has your spouse forgotten who you are? Under these circumstances, the second being far more devastating than the first, why would you want to go through the motions of celebrating Valentine’s Day?
Every person who becomes a caregiver will have unique personality traits, yet we nearly always share certain feelings and experiences as we travel a road similar to one another. That’s one reason that caregivers often turn to other caregivers for support. It’s a version of the adage that we need to walk in another’s shoes in order to truly understand what they feel. One of those shared experiences is a certain amount of stress. Some personalities cope with the ever changing, nearly always challenging, business of caring for another adult with health issues better than others.
One reason for this intense fear of Alzheimer's is obvious. While many types of cancer can be cured, most types of dementia cannot. However, another reason is that the idea of being betrayed by our brains to the point that we are essentially lost in the disease is abhorrent to most of us. This fear, unfortunately, tends to make many people less than willing to see a physician for dementia testing even when they are showing signs that point to the illness. People don’t want to hear that they have dementia.
When the average person thinks of dementia, generally Alzheimer’s disease comes to mind, and when people think of Alzheimer’s they think of memory loss. Both of these conclusions are understandable since Alzheimer’s is the most common form of dementia and memory issues are often the first symptom of that disease. Surprising then, to many people, is the fact that there may be more subtle indicators of potential Alzheimer’s disease or other types of dementia than memory lapses. If we feel that dementia may be in our future or that of our loved one, what other indications of cognitive change should we watch for?
...Fridays at the nursing home were very popular. Regular music groups would come by at the week’s end to play old favorites for the residents, always filling the room with cheer. My dad, who had dementia caused by failed surgery, loved the live music but also responded well to CDs of his favorites from the big band era. I know that his quality of life during his last ten years would have been diminished without music to help override the effects of dementia.
...Why would we be surprised? People with dementia are not less intelligent after they develop the disease than they were before. They aren’t less talented. They aren’t less in any way except that portions of their brains are being damaged so that they can’t always function well in the world as we know it. Anything that can level the playing field for people with dementia is bound to give them joy and renewed confidence.
...I know only too well that watching our parents get older is difficult. Ideally, they were once our anchors. No matter how difficult life became, there was comfort in knowing that our parents were around, even if they were half way across the country. Now, when we see their joints needing replacement, their skin wrinkling, perhaps even their memory recall slowing, we cringe. Whether or not we wish to admit it, we are afraid. We know that our parents are not immortal. One day we will be without them.Acknowledging our parents’ vulnerability is painful for us, and we want to protect them. This is a noble aspiration, but we need to move carefully and respectfully, always remembering that living life well often involves taking a few risks.