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My So-Called (Caregiver) Life

Debbie and her dad

Alaskan Debbie Newsham is a first-prize winner of Caring Today's 2006 "Give a Caregiver a Break" essay contest. She was "called into action" when her mother developed end-stage liver failure and was no longer able to care for Debbie's father (who has Alzheimer's) and grandmother (who was in a nursing home). Now, with help from her husband and three children, Debbie cares for her dad while holding down a job and serving as an advocate for caregiver rights and services, including her work with AGENET (Alaska Geriatric Exchange Network), a coalition of providers of adult daycare, nursing homes, assisted-living facilities and more. For Debbie's off-site blog, click here.

Family Dynamics

Submitted by Debbie on 2007, May 31 - 14:38.

Everyone has his or her own style of caregiving, having discovered what works and what doesn't. While caring for my dad, I came to the realization that my children would one day (I hope) care for me. Looking at my three kids, I began to wonder: What will they be like as caregivers when their turn comes around? Will birth order affect each one's caregiving style? I know these aren't questions that keep most caregivers up at night, but they did me. Well, to be honest, I was up anyway since summer is coming to Alaska and the long days are wreaking havoc with Dad's sleep schedule. So read on if you dare and remember I was a wee bit sleep deprived when I came to these conclusions.

The Only Child
As an only child, I can speak to this from personal experience. We all know that an only child thinks the sun rises and sets at his or her direction. The earth would stop rotating if he or she so wished. This child has known since birth that she is the apple of her parents' eye and the center of the universe. (Let's just say the only child has a...healthy ego.) When it comes to caregiving, the only child takes it on with gusto. Knowing her place in the universe, she accepts the responsibility and rises to the occasion almost flawlessly. As there are no siblings to consult, each decision is hers and hers alone. This is both a blessing and a curse; there is no one to lean on but, then again, there's no one to second guess her decisions (any second-guessing is done with love). Never having had to share her parents' love, she is confident in her role as the decision-maker and goes forth with courage and conviction.

The Eldest Child
Having three children, I have witnessed the rise and fall of the domination of the eldest. In the beginning, she was the Oracle, "She Who Must Be Obeyed", the "Jenniferator"; the biggest threat I had when my sons were small was "I am going to tell Jennifer" (the eldest). First of all, how sad is it that I resorted to threatening my babies with my other baby?!? As the children grew older, the impact of that threat lessened, but I could always elicit some sort of response by invoking "The Jennifer!" I realized that once I began referring to her as "My 401k plan," the stage was set. As the eldest, she will take caregiving in stride. There has always been an understanding that she is in charge, and I doubt that sharing the care burden with her siblings will be any different. The eldest child takes the challenges life throws her way as something that WILL be overcome and pushes through any obstacle. This is the child you want in your corner, this is the child who will take your Power of Attorney, shrink it to wallet size, laminate it and be able to produce it at the drop of a hat.

The Middle Child
How I love my middle child. His name is Buster, and he is just beginning to believe that we really do have his best interests at heart. For years he has taken every opportunity that has come his way and figured out how to make it work to his disadvantage. The middle child spends so much time agonizing over his place in life that he can miss the good stuff. With all that being said, his being a little lost in the scheme of things creates a special place in our heart. The middle child feeds the soul of those for whom they care. While I can count on my eldest to process the paperwork, the middle child will want to ensure I am happy. Something about all those lost years as a child creates an understanding of how lost and alone those we care for can feel. His empathy can be endless.

The Youngest Child
Or should I say the Baby, as such children are always "the baby" of the family. This child is the one that is idolized by his parents and resented by the older children. This is the child that had fewer rules and responsibilities and, therefore, made life rough on his older siblings. This is the child that got the choicest toys, the latest bedtimes and, if he didn't eat his peas, it was no big deal. By the time this child comes along the parents are more relaxed, less by the book and, frankly, tired and worn down by the older children. This baby will grow old but will not grow up in the parental eye. This is the child that will become the "Entertainment Committee." When I can no longer read, this is the one that will read to me; when I can no longer communicate, this is the one that will sing to and with me.

I guess the question becomes: Who are you and where do you fit in? Does your relationship fit into these models I foresee for my future caregivers?

Comments

family dynamics

You ignored one prevalent area of family dynamics: daughters and sons. The majority of caregivers I see are daughters, as am I. Actually, I may write a book on the subject, dedicated lovingly to my worthless brothers, who have time for any activity they choose except visiting our parents.

re: family dynamics

Ah, if it were as simple as daughters vs. sons.

I'm from a two-son family—no daughters here. The younger of the two of us, I do the grocery shopping, pill dispensing, bill paying and monitoring of hired caregivers while my brother does...well, not much. I make sure Mom (who lives 50 miles away) is not alone on holidays, I visit at least once a week, and I call almost every day. True, he lives in Florida and our mother and I live in NY, but he thinks he's doing a lot when he calls her more than once a week. Never does he ask if I need help or a break. Rarely, when I ask him to do me a favor in regards to her well-being, does he do so without my having to prod him.

So, please don't think it's a male/female thing. It's a matter of who cares and who doesn't, and one's gender isn't the only—and maybe not the primary—factor.

family dynamics

True, it's not just a gender thing, but a caring thing. Your mom is lucky to have you around. My brothers live about 60 miles away and come here often to shop or go to a sports event, but don't even stop and see our parents. I've given up on prodding. They say that they just can't handle it and that I'm doing so well with it all. Someone has to do something. I tried to do it all and still work, but I couldn't do it. I told my brothers I'd work for Mom and Dad, but if either of them wanted to take the job, they could. Of course, they were thrilled that I'd do it, so that's what I do now.

Both of my parents have dementia. Dad has advanced Alzheimer's, and Mom developed vascular dementia after a heart attack, probably from the stress of taking care of Dad. They are in a facility, but I am there almost daily helping with activities, making sure they have what they need, and overseeing their care. One month, I literally saved Mom's life three times b/c of problems with medicine, and this place is supposedly one of the best ones around. Besides, if I take two days away, Mom gets a bit loopy.

It sounds like I'm whining, but the experience has brought me many blessings I would've missed. Plus I know that I've done the best I can for them (most days), which is all I need to know.

re: family dynamics2

Vickie, I wish I could tell you how to convince your brothers that it's time they got into the act and did something to help both you and your parents. There will come a time when they will regret their being absent from their parents' lives, and that will be unfortunate for them.

You, on the other hand, will have peace of mind in the knowledge that you were there when it mattered, that you displayed your love and paid respect to those who had given of themselves for you.

Please don't think that your statements were viewed as "whining." Each of us who is in a caregiver role has hit that moment—often multiple times—when we just need to vent, to let the world know that life isn't going quite the way we thought it would and that we're, at least for the moment, not happy about it. Go ahead and vent as much as you like. That's what we're here for, to listen and share a lesson learned.

If you can, find a caregiver support group near you so that you have the opportunity to share your experience and learn from the experiences of others. It is both educational and comforting, especially in the realization that you're not alone in all this.

And please, continue to share your thoughts here. We're always willing and ready to read what you have to say.

Family Dynamics

Vickie,

When I wrote that blog I was really focusing on a small subset of caregivers. And I never considered gender merely family placement. In some ways I am so lucky NOT to have siblings as I don't have to come to a consensus, my word is law......lol And I don't have to deal with the very same, very real and very painful issues you are dealing with.

You are doing the tough job by being there for your parents. But I share your sentiment that ultimately you will have peace knowing you did the best you could. And you are doing the loving thing. And I for one find what you are doing gives me hope and courage to stick it out. We all need one another.