To Everything Turn, Turn, Turn: The Darker Side of My Caregiving Journey

Storm clouds on Yellowstone LakeTo everything there is a season. Twists and turns. Times when the bond between me and my loved one (my caree/wife) is deep and other times when it is constricted and vapid.

Such has been the recent case. However, it’s been a pattern for a long time, exacerbated dramatically when I had no choice but to have her placed in a nursing home. She was extremely angry at me. I think she still is deep down.

Besides having gotten sick from burn-out, losing my job, and so much more, I was left with a tremendous mess with which to contend; the foreclosure of her mom’s house and dealing with 45 years (and more if you count grandparents) of history to sift through; getting  the deed to mausoleums her uncle left her into her name; having an estate sale that was more of a bust in many ways then a boon; dealing with our house and the mess it had become; severe damage to the house by Sandy; four months to obtain Medicaid; and I can go on with a whole lake of other tasks I’ve had to handle and continue to have to handle.

In the mean time my wife  has continually wanted to dictate just about every move of mine the more and more she has felt out of control. She still does through guilt, shame, manipulation; using her illness as a weapon to get what she wants.

She expects me to be with her exclusively every moment even though it is not necessary and I have so many fish to fry. She has become a bottomless pit. She will not do anything to occupy her time. She doesn’t even seem to try to get better by affording herself of the services available to her, i.e., physical and occupational therapy. Every time we speak, it is a litany of her not getting her needs met or in some attention-seeking strategy. She wants treatment on her terms and often wants to dictate her treatment like the proverbial difficult health provider patient.

I realize the psychological aspects of the need for  control from a person who feels they have lost control of their life. However, it has gone too far. The issue is not a new one. It has been around as long as we have been married. I made a lot of concessions over the past 26 years out of what I thought was love. But as I look back, I see that I had been longing for love too much. Still in the early stages of  my bouts with Major Depression leading to Bipolar Disorder, I had lost a lot of confidence in my self. I continued to have the inferiority feelings I had since a child. And, there was the other guilt and shame of an adolescence and young adulthood not well lived in many instances.

So, as I look back, I lacked a solid foundation of healthy self-love. Without realizing it, I unwittingly got it from people outside of myself. Thus, I wound up losing myself. I lost so much of myself by making concessions that now I am painstakingly attempting to build that love for self; self-confidence; self-efficacy; etc. during perhaps one of the worst crises of my life.

My caree’s long-standing issues which were not always evident to me are now glaring at me. Her demands, her possessiveness, power and control issues have become inexhaustible and I fear being swallowed up by them. I am setting healthy limits and, when I do, I’m told I’m abandoning her. I tell her, if I crumble, I will no longer be of help to her. She says she understands but her actions belie her words as in the next breath she attempts to get more time out of me.

It has been a roller coaster ride of short-term agreements followed by the same old patterns. One might say they might even mirror the cycle of abuse, in this case, mental and emotional. What follows is physical burnout and feeling beaten down; emotional turmoil; mental anguish; and spiritual exhaustion and bankruptcy. As long as things are going her way its good. Once I express my needs for time to attend to very important tasks, self-care; etc., I’m distancing and abandoning.

I chose to use the Community Caregiving Journal to tell my story as the three words helped me to organize and write down my thoughts and experience. As many of you know, I already see a psychiatrist. I have a call out to a therapist who has a specialty of working with people who are dealing with a loved one with serious illness. And so I turn in other directions to develop bonds with others who can help me in this lake of turmoil I am experiencing. One day at a time, one moment at a time….with my Higher Power supporting and guiding me along with family and friends.

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22 Comments on "To Everything Turn, Turn, Turn: The Darker Side of My Caregiving Journey"

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Jan 5, 2013

Dear sweet Bob, you are going through a really rough patch I can see! I urge you however to not abandon your thoughts of the love you shared with Adle while you and she were on a more stable and realiable footing. She was the light of your life I think. No? Maybe you can still – on a shorter and limited time spent with her – rememeber that. What can I say? This journal is so different than the others you have written. Don’t you agree? I guess what I am saying is “Don’t throw the baby out with the bathwater.” Blessings, friend! And I hope you connect with your therapist soon! I know how much I need both of mine too. Life takes a new turn when we can write – what I call self-therapy – and talk to an expert. Please know I care! {{HUGS}}

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Jan 5, 2013

I hear you, Bob. And to me, you sound very self-aware of the dynamics going on. It’s painful, but it’s a lot better than being blind to them. Give yourself credit for recognizing the problems.

Many times I have to remind myself that it’s my partner’s disorder talking. I’ve had to detach myself from her neediness, manipulation, and anger, and focus on what will be best for both of us (both together and as individuals). Her neurologist has said we can’t tell where her brain damage ends and her psychiatric disorder begins, but that both exacerbate each other. I have to remind myself to not take things personally and to just keep on keepin’ on, which sometimes means standing my ground, especially where issues of health and safety are concerned. I am better able to express my love as a result.

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Jan 5, 2013

Dear sweet Bob,
You were just being YOU! Never worry when you tell us the true nature of your feelings. I just KNEW you loved your beloved wife more than you were thinking at the time. Adele is in a weakened place now. Scary and unknown. You are the pillar of strength now. You need to take care of her perhaps now – in addition to yourself and everything else which is so much too. No one is perfect, Bob. (Remember? Least of all me!!! Thank God!) Please forgive my calling you out on it. But I knew you had thought stuff which you didn’t mean. Now? After talking to Adele? You are even farther along your caregiving journey and can help her even more! Blessings! {{HUGS}}