Credit: Thinkstock It seems shocking to hear people ask whether dementia, particularly Alzheimer’s since it’s the best known, is as hard on the caregiver as it is on the person with the disease. After all, developing dementia of any kind is one of our greatest fears, even overtaking cancer. A caregiver who asks this question must be incredibly heartless and selfish, right? Yet, people who’ve never been a caregiver for someone with dementia need to think this through. When a loved one develops dementia, both the care receiver and the caregiver have entered an incredibly challenging time of their lives.
My dad had dementia caused by a failed surgery. Unlike Alzheimer’s disease and most other types of dementia, dad’s happened literally overnight. However, the ultimate effect was the same. A brilliant, kind, funny man turned into a frightened, paranoid man with a voice in his head. Certainly, his presenting symptoms were different from Alzheimer’s. With Alzheimer’s most often memory issues are the tipoff that something is wrong, though poor judgement and even personality changes are common as well. In the end, however, the person with the disease is often frightened, paranoid and sometimes hallucinating. They occasionally can become violent. Who would want to suffer this way? What could be worse?
Caregivers, on the other hand, typically still have their ability to think. They can determine reality, which may be part of the problem. Because the reality that they are facing is that their beloved spouse or parent is becoming increasingly dependent on them, even though the person may tell the caregiver that he or she is stealing from them or that the caregiver is abusing them. Eventually, the caregiver needs to come to grips with the fact that the person to whom they are dedicating their lives doesn’t even recognize them.
Additionally, the caregiver is now trying to keep the person with dementia from wandering out of the house and getting lost. He or she is coping with the fact that the person with the disease does whatever sleeping that gets done in spurts during the day leaving the caregiver with sleepless nights. The person needs toileting or an incontinence pad changed frequently, must be hand fed and has to be tended to every minute to make certain she is safe.
The caregiver is also left to consider how to pay tremendous medical bills because often he has to quit working to provide care. The caregiver is isolated because they can’t leave their loved one alone and friends are unsure how to help so friends stay away. Few who are not caregivers understand what the caregiver is going through.
Multiple studies have shown that the caregiver’s health may be permanently affected and caregivers become - likely from the stress of caregiving - more prone to developing Alzheimer’s disease themselves.
My answer to this painful question has to be that the person with the disease still has it hardest. He or she is lost in an alien, frightening world. However, the caregiver comes close. Watching the decline and eventual death of someone with dementia, where the brain goes long before the body, truly does test the strength of the human spirit.
I’ll never judge a caregiver who contemplates, at times, which is worse. It’s likely few dementia caregivers haven’t, at least after weeks of little sleep and unending responsibility, wondered if they’d rather have changed places with the person for whom they are providing care. Not for altruistic motives, but for selfish ones. They have a right to some episodes of self-pity. Those who don’t know what providing care for someone with dementia is like shouldn’t judge.
Carol is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. She runs award winning websites at www.mindingourelders.com andwww.mindingoureldersblogs.com. On Twitter, f_ollow Carol @mindingourelder and on Facebook: _Minding Our Elders
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