I have noticed some things recently while looking at blogs, articles and books about FTD and other dementias. Firstly, most people are writing about Alzheimer’s Disease. Secondly, writers are generally expressing the difficulties they are experiencing with day-to-day caregiving of a parent.
We Boomers are also known as the”Sandwich Generation”. That is, that we are ‘sandwiched’ between caring for our children (and hopefully getting rid of them from our homes) and caring for our aging parents. This all within the context of our own aging. There are books, Facebook pages, blogs, websites – all dedicated to helping or giving advice to caregivers of demented parents.
What jumps out the most to me from my reading is that the people who are taking care of parents have a totally different perspective from those who are taking care of a spouse or life partner. When your spouse is affected, you have shared a life, bed, trials and tribulations with someone for forty years – your whole adult life in fact. Then along comes this bastard disease and screws everything up. Everything.
The assumption is that two people who love each other (in the biblical sense) also “care” for each other. If they didn’t one would hope that they parted long before dementia set in. If they didn’t then dementia would almost certainly help them achieve this. When it comes to “caring” however, then it’s a whole different can of worms, ball of wax, ball game – whatever metaphor you choose. Caring for your partner, your equal, your lover, your protagonist – well that’s hard. Because when you said “In sickness and in health” (if you did say that) when you were twenty years old, you didn’t really think it would ever come to that did you? So now, here you are – thirty six years later. The genie has come back to make you fulfill your promise. Make good on your vow. Promises, promises.
Caring for a person with FTD or Early-Onset Alzheimer’s is different because of the young age of the onset of the disease (usually around age fifty, maybe earlier). Watching your husband (I am using this word but you can substitute wife, partner, lover in here) disappear before your very eyes is a strange phenomenon. He occasionally pops out to say hello (or more usually – “F**k off!”). But generally speaking he does not exhibit behavior expected of a fifty-six year old father of two. He will touch you and kiss you just as he has for almost forty years. But the emptiness in his eyes makes you feel like you are being molested by a stranger.
So if he/she will even allow you to “care” for them – physically and parentally, there is a little part of you that shies way from it. Even if they still recognize you, it can be fleeting. Sometimes they will acquiesce to your care, sometimes not. They are changed, altered, distant. But often physically healthy and strong, very strong.
Taking care of a parent, the role reversal is probably the most marked change. The “Sandwich filling” (son or daughter) picks up where they left off taking care of their own kids and start the whole process again. Only this time with the person who did the exact same things for them as they grew up. Alzheimer’s Disease generally affects people in later life – maybe in their sixties, usually seventies and eighties. As a rule. People who are grandparents and great-grandparents.
Somehow this seems a more natural process – grown children taking care of their parents. It happens all across the globe in all cultures. More so in some than others, elders are revered and accepted as they are. As they become less physically strong, their wisdom and experience continues to be respected. Sadly when the disease affects cognition it becomes difficult to continue to recognize this wisdom. Time is consumed with the daily physical care. To a certain degree, it is expected of us all. Even if the caring extends to placing their parent in an institution, it is still, for the most part, considered caring – expensive, but still caring.
Parental caregiving is different from spousal caregiving. We don’t choose our parents. We don’t fall in love with our parents, aren’t intimate with them, have children with them. We don’t eat Ramen noodles together and sleep on friend’s floors. We don’t go out dancing with them until 3 am and then go home and eat ridiculously un-nutritious food and laugh because we are a little drunk.
We love our parents. We care for our parents. We take care of our parents. Just as they took care of us when we were born. It is the cycle of life.
We love our spouses. We care for our spouses. If we have to, we take care of our spouses. It’s different. It is not the cycle of life.