Its an odd mix of theory and personal experience, but there is an article about spousal caregiving here: http://harvardmagazine.com/2010/07/on-caregiving
The author is trying to consider the deeper meaning of caregiving, but it seems idealistic to me.
I'm thinking...did it seem idealistic to me? I'd say no. I read it as an essay on how it is in the carrying out of the unglamorous, but necessary tasks of living as a human, with other humans, that we realize the essential nature of what "being human" really is. I.E., it is not merely the heights of intellectual accomplishment, nor the glory of popularity--things we may view as success, or may have as goals--that answer the question "did we live?" But rather that to be an integral human, a real fully-fledged version of a person, means engaging in the social experience of being with and caring for your fellows, whatever that entails.
oops...sorry Pam, I may be going all idealistic here! ; )
(not to mention, I'm completely veering off on a tangential bit of the writer's theme, which specifically pertains to long-term caregiving and how it has often been overlooked as a primary and essential feature of what SHOULD be addressed by the medical community when it comes to advising new recipients of crappy diagnoses.)
It occurs to me...Arthur Kleinman is exactly the sort of person of whom I'm apt to be envious--a scholar, accomplished in academics and in the professional path he pursued, who now finds himself with a life that is, in many ways (prestige, intelligence, and curriculum vitae notwithstanding) very similar to mine. Then there is me. I, who did what--to a more or less edifying degree--any woman can do. I ignored the nagging angst telling me I should "accomplish something" and immersed myself in the lives of my kids, adding intellectual enrichment to my life merely as a hobby, rather than as a primary pursuit. And now, here I am with even more limited choices. My husband needs care and more or less constant "babysitting," and who is there to provide it, but me? A part of me wishes to run away/flee/fly find a way to "be something" now that my children are close to independence.
But, the thing is, I know I'm not going to do that. I'm going to stay and do the work. And it's not because of societal pressure, or a sense of giving up, or a total abandonment of any other wishes I may have regarding what life could be. It's because, essentially, I am aware that to assume this rather heavy mantle of caregiver, given the way the deck has been dealt, is to carry out who I am. Given the parameters laid before me, this is what I would do. This is what I am. This is what being human is going to be about this go round.
I liked this line, where Kleinman acknowledges that--despite the truth of the life he's accepting--it's no picnic. Note, especially, the last line: "...we have also experienced a deepening sense of responsibility, gratitude for all that we had lived through together, love, solidarity, and a shared sensibility that we have resisted what is beyond our control and are, individually and collectively, more for it. This is not meant as a self-satisfying summing up—there is no final summary yet and the proper genre is tragedy, as millions who are engaged in these everyday practices know."
Emily, I hear what you are saying. There is this confilct inside and you have to resolve it. I think we all try to deal with it as best as you can. The younger care giver has more conflict I feel as you know what you are giving up is something you may never be able to get back again. You do it beacause it is the right thing to do but, it is not an easy task. I find it very difficult to deal with what you see your spouce going thru. You want to do your best for your spouse and at the same time you would like to have a life of your own.
The younger care giver really has a difficult task but so does the older care giver who knows that she has very few years to live and most certainly may not have a life of her own left to live. Yet we stay committed to taking care of our spouses as well as we can. I pray for all of us going through this terrible journey.
Bama, you and others here who are a little older than me are my heroes! You give me the inspiration I need to keep keeping on in this journey - all downward.
Moorsb and bama, you both spoke very eloquently about how most of us feel, especially we older ones. I CAN imagine what the younger caregiver is going through, but, when there are children or teenagers involved, I CANNOT imagine it. I see what conflicted emotions my grandchildren are going through because this man they idolized is not the same, especially the teenagers and 11-year-old; the little ones just know Papa and they love him as he is. So, to have children who have a father wtih AD has to be heartbreaking, and for the wife/husband as well, who have to live their most productive years taking care of their spouse.
On the other hand, as Bama says, we older ones have few years left and wonder if we will have a life after AD, especially with the health problems we have ourselves. But, we did take some vows, didn't we, "for better or for worse" and when we took those vows we meant them. Still, we can't help wondering what our lives would be like without dementia, all the dreams we had for retirement, the fun we were going to have with the grandchildren, just having time to do what we were unable to do when we were young. All of that has been taken away from us, but we still try to do the best we can. There are many tough days ahead and there are times when we feel sorry for ourselves and the crying starts and everything seems hopeless, but, the next day we get up, the sun is shining, and we feel better just being alive, and we go on.
Emily, you have given me much food for thought : I would never have been able to articulate it as you did, but I think that this is my position as well:
<< I am aware that to assume this rather heavy mantle of caregiver, given the way the deck has been dealt, is to carry out who I am. Given the parameters laid before me, this is what I would do. This is what I am. This is what being human is going to be about this go round. >>
I always tell people who compliment me on "how well I'm coping" that I do what I have to do, but in fact it's a little different: I accept it and embrace it because it has fallen to my lot? To do this job as well and as happily as I can is to fulfil my destiny as a human? Now I'm starting to sound idealistic, and I'm not. I'm going to try to think of a new way of putting it simply.
My take on it is both is hard but when you are older, you know you will have to deal with these issue, it should not be unexpected you had the opportunity to do some things at might not be possible at an older age. The younger caregiver never saw this comming, never even thought it was possible. The best years physically and mentally are being diverted to deal with the issue at hand and not the plans that we thouhgt we would execute at this stage of our lives.
I don't know if this relates to what the author said or not, but I have felt that in most cases, how one accepts/performs the dementia caregiving experience really speaks to the core character of the individual. There aren't many other situations that require so much selflessness, so much sacrifice of personal freedom, over such a long period of time. Yet there are so many of us out here, doing this day after day, year after year. I guess I do agree that this is what being human--or at least, a good person, is all about.
As I grow and become more comfortable in this unwanted "job" I am beginning to see myself in the role of "service" as in the Christian meaning of the word.
Everyone has written so well. It's a tough mantle that we carry, and I'm trying to do the job so well ... but sometimes it's so hard. Whether we're younger or older caregivers, it's not the life we expected. Very often I wish I could run away, and I chastise myself for that ... then I realize I'm not perfect ... and only human (which opens up a new definition of what it is to be human). But from a Christian standpoint, the bible tells us that even Jesus prayed before the crucifixion, "...Father, if it be possible, remove this cup from me."
Yes, we're all playing the hands we've been dealt. And I think we'll all go through different stages of acceptance/resentfulness, kindness/anger, dedication/selfishness, depression, exhaustion, and withdrawal. It's just a constant emotional rollercoaster and the ups and downs are getting higher and lower every day.
But we're all hanging in there and doing the very best we can, and I'm so grateful for all of you. The sharing we do is so helpful. Each of you are so special. Hugs to all.